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ACCELERATING THE PACE OF DISCOVERY 2013 Annual Report


MISSION

VISION

Leading the fight to treat and cure ALS through global research and nationwide advocacy, while also empowering people with Lou Gehrig’s Disease and their families to live fuller lives by providing them with compassionate care and support.

Create a world without ALS


MESSAGE FROM JANE H. GILBERT For those of us engaged in the fight against amyotrophic lateral sclerosis (ALS), nothing short of effective treatments and a cure will be considered a victory. The people who have been diagnosed, the families and friends who love and care for them and the millions who have already lost someone to ALS are looking to The ALS Association and the scientific community to lead the way in the quest to put an end to this terrible disease. For decades, this journey has been slow and tedious; however, reason for hope is on the horizon. Thanks to those who have partnered with and supported The ALS Association, there are many areas where encouraging progress indicates tangible results in the near future. As you will read in our financial report, The Association has been a good steward of your philanthropic contributions. This past year, 80 cents of every dollar you donated went to support programs serving the ALS community. Our ratios reflect an improved spending position thanks to more investment in research and realizing more than $6 million in donated media revenue—an area which will continue in future years, as we push forward to meet our goal of increased awareness for ALS. Building on the discovery of the role of the C9orf72 gene mutation, which was published by two different ALS Association-funded research teams, many scientists across the globe have begun to explore new areas of ALS research. And, the focus on ALS Research during the past year has created unprecedented excitement among members of the scientific community. The ALS Association’s nationwide network of chapters offer services to people with ALS and their families, and local certified centers and clinics provide multidisciplinary care that is the recognized gold standard for treating ALS patients. A growing body of evidence indicates that this type of coordinated care not only helps people manage symptoms but may also increase life expectancy. The Association’s public policy efforts have continued to successfully increase congressional support for ALS research funding at a time when many government programs have been reduced or eliminated. This achievement is due in great part to the active participation of advocates who come to Washington, D.C.,

each May during the National ALS Advocacy Day and Public Policy Conference. Advocates learn about the current initiatives and take their message to lawmakers on Capitol Hill. It is personal stories about living with the disease, along with a consistent, coordinated message that makes this approach so effective. While ALS still must compete for public attention with causes that impact many more people, no disease is more devastating or deserving of public support. The Association was able to reach millions of Americans through a successful public service announcement campaign, an invigorated public media outreach and the continually growing Walk to Defeat ALS® program. Altogether, the ALS message reached more people this year than ever before. All of these successes, however, do not begin to address the depth and breadth of the need. People continue to be diagnosed. Families and their loved ones still suffer from the progressive nature of this disease. And the cruelest fact of all, every day more and more Americans die of ALS. This is totally unacceptable to me personally and as President and CEO of The ALS Association. This is why I begin each day with a personal challenge: What can I do today to move us closer to finding answers? How can I help the nation become more involved in the fight to discover effective treatments? What leadership decisions can I make to guide The ALS Association toward our ultimate vision of creating a world without ALS? With your support, I will continue to ask these questions, and to the best of my ability, work to provide smarter, faster, and more effective answers. This is my promise. This is my pledge. This is my purpose. My most sincere thanks and very best regards, Jane H. Gilbert President and Chief Executive Officer The ALS Association

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IT’S BEEN MORE THAN SEVEN DECADES since amyotrophic lateral sclerosis (ALS) was first brought to the public consciousness. On July 4, 1939, in one of the most famous speeches of the 20th century, baseball great Lou Gehrig told a hushed Yankee Stadium crowd about the illness that had ravaged his body, finally taking him out of the Yankees’ lineup after a remarkable 2,130 consecutive games played. At the time, few people knew anything about the progressive, degenerative neuromuscular disorder that takes hold of men and women, often in the prime of their lives, and steadily robs them of their ability to initiate and control muscle movement––and, eventually, to speak, eat or breathe. The average life expectancy from diagnosis is two to five years––and it was no different for Gehrig. Less than two years after he moved his fans to tears with his public farewell, the man whose strength and durability had earned him the nickname “Iron Horse” would lose his life to ALS, thereafter also known as Lou Gehrig’s Disease. For much of the time since Gehrig’s announcement, progress in the effort to defeat ALS––to understand its cause, develop effective treatments and ultimately find a cure––has been painfully slow. But in recent years, something has changed. Like never before, we are seeing an acceleration of the pace of discovery as scientists unravel the complex pathways involved in the development of ALS, learn about the genetic culprits, and follow these clues to develop promising new treatments to be tested in clinical trials. Lou Gehrig’s Disease continues to bring suffering to people from all walks of life––and immeasurable heartache to their spouses, children, parents, siblings and other loved ones. But it is now quite clear that the momentum is on the side of the growing community of researchers working to relegate ALS to the history books. In FYE 2013, a coordinated worldwide ALS research effort made significant strides, taking advantage of major discoveries in genetics the year before and focusing attention on several key pathways as potential targets for treatment.

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The feeling that now is the time to capitalize on the growing understanding of the disease’s causes wasn’t lost on Capitol Hill. Just three days after people with ALS and their family members met with members of Congress at the National ALS Advocacy Day and Public Policy Conference, the U.S. House of Representatives passed legislation to provide $7.5 million in funding for the ALS Research Program at the Department of Defense––a 17 percent increase over the previous year, remarkable in an era of financial austerity. Meanwhile, from baseball stadiums to fundraising walks, and through television public service announcements and social media, more people than ever before were learning about Lou Gehrig’s Disease. Many of them were joining robust local and national endeavors to assist people living with ALS and supporting the goal of bringing an end to the disease once and for all. Driving these efforts, as has been the case since our founding in 1985, was The ALS Association––the only national nonprofit organization engaged in every aspect of the fight: coordinating and funding a global research program; advocating for policies and financial support to enhance the research effort and improve the lives of people living with ALS and their families; delivering stateof-the-art, multidisciplinary care through ALS Association Certified Centers of Excellence and clinics; providing education and resources to assist people with ALS and their families through their ordeal; and promoting awareness of and public support for Lou Gehrig’s Disease. In FYE 2013, The Association gained steam in all of these areas––not the least of which was to fuel an ever-increasing pace of discovery that is moving us closer to a world without this devastating disease.

RESEARCH INVESTMENTS PAYING DIVIDENDS The Association’s Translational Research Advancing Therapy for ALS TREAT ALS™ program serves as a catalyst for a systematic and comprehensive effort to solve the mysteries surrounding ALS and bring effective new treatments to people who urgently need them. It does so by funding a coordinated global research effort that helps to draw top researchers to the field and enables exciting new hypotheses to be pursued; by forging partnerships among researchers and with the government and private industry; and by hastening the pace at which promising laboratory discoveries can be translated into new therapies


proteins produced by the genes FUS and TDP-43 have been linked to familial and moved through clinical trials. As of January 31, 2013, there were 97 active ALS and are believed to be involved in the disease, either by causing a new projects funded by The Association for a total commitment of more than $15.5 million. And by investing in a better understanding of the genetic and molecular toxic response or through loss of the proteins’ normal function. ALS Associationfunded researchers made a number of intriguing discoveries surrounding these causes of Lou Gehrig’s Disease, The Association is paving the way for exciting proteins in FYE 2013. Among them was the observation that the FUS protein developments that are beginning to bear fruit. physically interacts with a protein called SMN, whose absence causes another Capitalizing on Genetic Discoveries. One of the most closely watched developmotor neuron disease, spinal muscular atrophy. This interaction suggests that ments in ALS research in FYE 2013 stemmed from the discovery in late 2011 by the two diseases may be linked at the cellular level. Other researchers funded two independent research teams that muby The Association discovered that the tations in the C9orf72 gene are associated FUS and TDP-43 proteins bind to some of with ALS, as well as frontotemporal dementhe same genes, raising the likelihood that tia (FTD). The announcement led to the these genes may be especially important in recognition that the mutations in this gene understanding how mutations in FUS and are the single most common known cause TDP-43 cause ALS. Finally, ALS Associof ALS throughout the world, accounting for ation-funded researchers reported that approximately 35 percent of familial cases a cell rescue strategy may go awry when and six percent of sporadic (non-inherited) TDP-43 is mutated, which could mean cases, as well as about one-fourth of FTD that removal of the enzyme at the heart of cases. Researchers funded by The Assothat strategy would be therapeutic. ciation have led the way in characterizing Elsewhere, ALS Association-funded the nature of the gene mutation, building researchers showed that mutations in a the first cellular and animal models of the transport gene called profilin appear to gene, and determining the consequences account for one to two percent of inherited of the mutation for motor neurons and surALS cases, highlighting the importance rounding cells. A further understanding of how the mutated C9orf72 gene causes J. Paul Taylor, M.D., Ph.D., and Regina-Maria Kolaitis, Ph.D., 2012 recipient of The Milton Safenowitz of the transport system within the cell for Post-Doctoral Fellowship, from Saint Jude Children’s Research Hospital in Memphis, Tenn. motor neuron health. Two ALS AssociationALS will likely reveal important new pathways that control motor neuron health and point to multiple targets for new drug funded groups also made advances in understanding factors influencing the therapies. In addition to fueling continued efforts to learn more about the gene’s age of onset of ALS––discoveries that may lead to ways to delay onset by role in Lou Gehrig’s Disease, The ALS Association is contributing to scientific dis- influencing these pathways. cussions on the topic. In October 2012, The Association presented a symposium Biomarkers Bring Valuable Tool to Clinical Trials. The effort to accelerate the at the annual meeting of the Society of Neuroscience––the largest gathering of process of taking promising drugs to clinical trials is advancing on multiple neuroscientists in the world––on the latest understanding of the C9orf72 gene. fronts. One involves the development of biomarkers––substances in the blood or cerebrospinal fluid that change with the disease state and thus can be used As researchers homed in on the C9orf72 gene, the biology of several other ALS both for earlier diagnosis and the tracking of response to a therapy, facilitating genes was also the focus of important new discoveries. Similarly functioning

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more decisive clinical trials of new drugs. The Association is funding a consortium effort, enlisting leading researchers and biotech companies in the search for reliable biomarkers of ALS. In FYE 2013, two laboratories funded by The Association announced their discoveries of potential biomarkers, which will now be refined and evaluated further for their potential to be used in clinical trials. TREAT ALS Accelerates Development of New Therapies. The Association also continues to move proactively to speed therapy development combining efficient new drug discovery approaches with priorities set for existing drug candidates to accelerate clinical testing of compounds with promise for the disease. In FYE 2013 more than $6.6 million was awarded by The Association through TREAT ALS in the form of grants, drug discovery contracts and clinical and research studies. Major funding was provided for the development of remote treatment strategies to aid home care of people with ALS, preclinical assessment of potential therapeutic compounds, biomarker development studies, and clinical pilot studies of new treatment strategies for ALS, in partnership with the Northeast ALS Consortium (NEALS) Clinical Trial Network. In March 2012, The Association brought together more than 120 researchers, drug developers, government officials, and other interested parties to brainstorm on ways to accelerate drug discovery for ALS treatment.

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MAKING THE CASE: SUCCESSFUL ADVOCACY ON CAPITOL HILL Every year in the nation’s capital, The ALS Association hosts the National ALS Advocacy Day and Public Policy Conference––a three-day event in which people touched by Lou Gehrig’s Disease from all walks of life and from nearly every state in the country gather to make their voices heard. At the 2012 conference held May 13 to 15, more than 900 attendees told the ALS story––their personal experiences and those of their loved ones––and urged legislators to support the needs of the ALS community. One of the main goals was to urge Congress to step up the fight for a treatment and cure, and on that score the conference was a resounding success. Advocates held more than 400 meetings with members of Congress, and their compelling stories moved legislators to act swiftly. In addition to triggering the 17 percent increase in the ALS Research Program passed by the House of Representatives, the meetings led to a more than doubling of the number of co-sponsors of the Modernizing Our Drug and Diagnostics Evaluation and Regulatory Network (MODDERN) Cures Act, legislation that would provide incentives to encourage the development of new treatments for diseases with unmet medical needs, including ALS. With bipartisan support, that legislation was introduced by Rep. Leonard Lance (R-NJ). Public Policy Conference Offers Many Highlights. The conference was memorable in many ways. Dr. Kevin Horton, who leads the National ALS Registry at the Centers for Disease Control and Prevention, unveiled exciting new features of the registry, including modules that will collect additional information about the disease (such as information on head trauma) to help researchers find clues to the cause of ALS. Dr. Horton also announced the launching of a new tool that notifies people enrolled in the registry about clinical trials for which they may be eligible to participate. The conference featured the first-ever “familial ALS Summit” (fALS), where participants learned about exciting research into fALS and were able to share their personal experiences on issues unique to familial cases. At other sessions, renowned ALS researchers and representatives of the pharmaceutical and biotech industries discussed the latest advances in ALS research and the promising clinical trials underway.


National ALS Registry Brings Many Benefits. FYE 2013 was also notable for the continued support garnered for the National ALS Registry, which went live on October 19, 2010, and has the potential to become the single largest ALS research project ever created. The ALS Association led the successful fight to establish the registry and secure federal funding to design, build and implement it at the Centers for Disease Control and Prevention/Agency for Toxic Substances and Disease Registry. The registry’s aim is to identify ALS cases throughout the United States––every person in the country living with Lou Gehrig’s Disease can self-enroll––and, more importantly, to collect critical information about the disease that will improve care, reveal insights into its causes, and point researchers toward potential treatment and prevention strategies. In FYE 2013, The Association worked with Reps. Eliot Engel (D-NY) and Peter King (R-NY) to circulate a “Dear Colleague” letter among members of Congress to ensure continued funding for the registry. More than 45 members signed the letter, which was delivered to the House Appropriations Committee. In the Senate, the Appropriations Committee voted to provide an additional $6 million to continue the registry. The legislation ultimately passed, bringing total registry funding to more than $30 million. Research Funding Increases. Meanwhile, the increase for the ALS Research Program at the Department of Defense to $7.5 million brings the total funding for the program to $40 million, all of which is explicitly focused on finding treatments for ALS. The vote came after The Association worked with Reps. Elton Gallegly (R-CA) and Chellie Pingree (D-ME) to circulate a “Dear Colleague” letter in the House, which was signed by 55 members of Congress. FDA Policies Aim to Accelerate Drug Approval Process. The Association also worked with the U.S. Food and Drug Administration in FYE 2013 to enact two important policies aiming to expedite the development and approval of ALS treatments. The Food and Drug Administration Safety and Innovation Act, signed into law on July 9, 2012, and the Prescription Drug User Fee Act, renewed for the fifth time in 2012, include important provisions that, among other things, strengthen the fast-track and accelerated approval processes to speed access to new treatments; require the FDA to partner more closely with patient organizations representing those with rare diseases; and provide additional flexibility for the FDA to approve new treatments more quickly through the use of biomarkers and other surrogate endpoints.

ENSURING STATE-OF-THE-ART CARE AND SUPPORT While leaving no stone unturned in the pursuit of better treatments and a cure for Lou Gehrig’s Disease, The ALS Association is equally focused on ensuring excellent care and support for the people who are currently living with ALS, as well as for the family members who are going through the ordeal with them. The Association’s nationwide network of chapters and other partners provide local patient and family support in communities across the country. Each chapter is a grass-roots organization that carries out The Association’s mission and strategic goals at the community level. With support from the national office, chapters provide a wide range of services for people living with ALS, their caregivers, families and friends, along with professional health care providers throughout the service area. This includes patient education programs, support groups and referral services, as well as equipment loan programs, augmentative communication device programs, and referrals to ALS clinics and physicians. In addition, The ALS Association’s Certified Center program defines, establishes and supports a national standard of care in the management of ALS, including multidisciplinary, state-of-the-art care and services in a supportive atmosphere that emphasizes hope and quality of life. The Association supports 34 Certified Centers of Excellence as well as 42 non-certified clinics providing services that follow nationally established “best practice” standards of care. As part of The Association’s continued effort to ensure the most effective care for ALS patients, a cost study was initiated using data collected through 18 of The Association’s Certified Centers. The goal: to identify specific costs associated with providing care through a clinical center of excellence. An additional

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case study of one family’s financial journey was completed on a retrospective basis. Results from each of these studies were presented at the ALS/MND International Symposium in December 2012. A Wide-Ranging Educational Curriculum. Recognizing the importance of education for providers, staff, people living with the disease, families and caregivers, The Association has developed an education curriculum that includes meetings for medical directors, a national clinical conference, regional meetings, assistive technology and professional topic webinars, research updates, sessions at the National ALS Advocacy Day and Public Policy Conference, and a library of more than 50 published documents. The national office handles more than 400 information requests and referral programs per month. Meanwhile, The Association continues to work with chapters and providers to identify opportunities and models of service delivery that will expand access to The Association’s services and programs, while achieving consistency in our portfolio across the country. Recognizing the value of collaboration, The Association also continues to reach out to other organizations in an effort to increase effectiveness and efficiencies.

SPREADING THE WORD AND ENLISTING NEW MEMBERS TO THE CAUSE For the thousands who are affected by Lou Gehrig’s Disease now and in the future, having a reliable information source as well as open lines of communication with both experts and others experiencing the same struggles is vitally important. Moreover, while people with ALS and their loved ones know all too well about the havoc wreaked by ALS, tens of millions of Americans who haven’t been personally affected must be made aware of the urgency to overcome this terrible disease. Website Enhances Visibility. The Association works on all of these fronts to improve awareness of Lou Gehrig’s Disease, starting with our website (www.alsa.org). In FYE 2013, many improvements were made to the site to keep it fresh and enhance the visitor experience. These included greater visibility for stories published by The Association, links to general news stories about ALS, a reorganized front-page navigation, and an embedded Twitter feed. The reorganization also provides a more direct path for users to take action,

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with a one-click “donate now” button highlighted, as well as larger links reading: “Advocate” and “Help Fight ALS.” These improvements have contributed to a significant increase in traffic on the page, with the average monthly unique-visitor rate growing by 100,000 over the previous year. Overall, traffic to the site is well above benchmarks for disease and health charities and has recently begun to exceed the benchmark for the largest nonprofits. Social Media Outlets Help to Increase Interaction. Social media also continues to play an increasingly important role as a vehicle for sharing information and interacting with families fighting ALS, as well as with the general public. The Association utilizes several social media channels, including Facebook, Twitter, LinkedIn, Google+ and Pinterest, sharing information about its research and care services programs, public policy endeavors, and awareness activities. In FYE 2013, for the first time The Association live-streamed Advocacy Day conference sessions on our Facebook page for conference non-attendees. For the year, Facebook “likes” increased by more than 25 percent, while Twitter followers grew by 40 percent. In an effort to help people with ALS enroll in the National ALS Registry, The Association engaged in a number of public awareness activities, including a national awareness campaign with Minor League Baseball and a nationwide ALS Registry public service announcement featuring baseball great Tommy John. Outreach to Traditional Media Keeps ALS in Public Eye. Enhancing awareness is also accomplished through traditional media. Partly due to a more robust media outreach effort and an increase in the number and frequency of ALS research study publications, The Association experienced a 39 percent increase in media mentions in FYE 2013 compared with the previous year. The Association held its annual Veterans Day letter-to-the-editor campaign, and staff participated in interviews for newspaper articles and talk-radio programs. Particularly notable was a television public service announcement (PSA) produced by The Association with TV and Broadway star Jason Alexander and Steve Posso, who has lived with ALS since 2007. The PSA debuted in January 2012 and soon was appearing on network, regional and cable TV stations nationwide, airing nearly 18,000 times on more than 140 stations to a viewing audience of 408 million for the year, as well as being shown in movie theaters across the country. This effort amounted to more than $6 million in donated, in-kind advertising revenue.


Walk to Defeat ALS® Marches On. Finally, there was the Walk to Defeat ALS, a nationwide campaign to bring hope to people with the disease while raising money for a cure through high-profile events. FYE 2013 represented a new milestone for the program, with 170 walks and approximately 175,000 walkers raising $21.7 million––a six percent increase over the previous year. Since 2000, the Walk to Defeat ALS has contributed more than $159 million toward the fight to bring an end to the disease.

FIGHTING FOR THOSE WHO CAN’T Lou Gehrig’s Disease robs individuals of their physical capabilities. It can be extremely trying not only for people with the disease, but also for family members who must stand by as their loved ones deteriorate, powerless to prevent the decline. But through the efforts of The ALS Association, these individuals will never feel alone. Indeed, they are not alone. They are joined by the legions of community members all over the country, enlisted to the cause and walking in solidarity with those who can no longer do so. The Association is fighting for all of these individuals. And as we continue our march toward a world without ALS, our pace is accelerating.

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CONTENTS

INDEPENDENT AUDITORS’ REPORT

11

STATEMENT OF FINANCIAL POSITION

12

STATEMENT OF ACTIVITIES

13

STATEMENT OF FUNCTIONAL EXPENSES

14

STATEMENT OF CASH FLOWS

15

NOTES TO THE FINANCIAL STATEMENTS 10

16-20


INDEPENDENT AUDITORS’ REPORT The Board of Trustees The Amyotrophic Lateral Sclerosis Association Report on the Financial Statements We have audited the accompanying financial statements of The Amyotrophic Lateral Sclerosis Association (The “Association”) which comprise the statement of financial position as of January 31, 2013, and the related statements of activities, functional expenses, and cash flows for the year then ended, and the related notes to the financial statements. Management’s Responsibility for the Financial Statements Management is responsible for the preparation and fair presentation of these financial statements in accordance with accounting principles generally accepted in the United States of America; this includes the design, implementation, and maintenance of internal control relevant to the preparation and fair presentation of financial statements that are free from material misstatement, whether due to fraud or error. Auditors’ Responsibility Our responsibility is to express an opinion on these financial statements based on our audit. We conducted our audit in accordance with auditing standards generally accepted in the United States of America and the standards applicable to financial audits contained in Government Auditing Standards, issued by the Comptroller General of the United States. Those standards require that we plan and perform the audit to obtain reasonable assurance about whether the financial statements are free of material misstatement. An audit involves performing procedures to obtain audit evidence about the amounts and disclosures in the financial statements. The procedures selected depend on the auditor’s judgment, including the assessment of the risks of material misstatement of the financial statements, whether due to fraud or error. In making those risk assessments, the auditor considers internal control relevant to the entity’s preparation and fair presentation of the financial statements in order to design audit procedures that are appropriate in the circumstances, but not for the purpose of expressing an opinion on the effectiveness of the entity’s internal control. Accordingly, we express no such opinion. An audit also includes evaluating the appropriateness of accounting policies used and the reasonableness of significant accounting estimates made by management, as well as evaluating the overall presentation of the financial statements.

We believe that the audit evidence we have obtained is sufficient and appropriate to provide a basis for our audit opinion. Opinion In our opinion, the financial statements referred to above present fairly, in all material respects, the financial position of The Association at January 31, 2013, and the changes in its net assets and its cash flows for the year then ended in conformity with accounting principles generally accepted in the United States of America. Report on Summarized Comparative Information We have previously audited The Amyotrophic Lateral Sclerosis Association’s 2012 financial statements, and our report dated May 17, 2012, expressed an unmodified opinion on those audited financial statements. In our opinion, the summarized comparative information presented herein as of and for the year ended January 31, 2012, is consistent, in all material respects, with the audited financial statements from which it has been derived. Other Reporting Required by Government Auditing Standards In accordance with Government Auditing Standards, we have also issued our report dated June 18, 2013, on our consideration of The Amyotrophic Lateral Sclerosis Association’s internal control over financial reporting and on our tests of its compliance with certain provisions of laws, regulations, contracts, and grant agreements and other matters. The purpose of that report is to describe the scope of our testing of internal control over financial reporting and compliance and the results of that testing, and not to provide an opinion on internal control over financial reporting or on compliance. That report is an integral part of an audit performed in accordance with Government Auditing Standards in considering The Amyotrophic Lateral Sclerosis Association’s internal control over financial reporting and compliance.

Long Beach, California June 18, 2013

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STATEMENT OF FINANCIAL POSITION FOR THE FISCAL YEAR ENDED JANUARY 31, 2013, WITH COMPARATIVE TOTALS FOR 2012 JANUARY 31, 2013

2012

ASSETS ASSETS

Cash and cash equivalents Investments in marketable securities Receivables: Bequests, net Chapters, net Pledges, net Other Prepaid expenses Beneficial interest in perpetual trusts Contributions receivable from remainder trusts

$

Property and equipment, net Other assets TOTAL ASSETS

7,302,712 7,314,287

$

6,834,970 6,724,420

333,604 2,695,876 696,219 38,105 230,418 970,275 207,483

731,231 3,724,841 321,402 174,318 305,027 939,667 291,389

222,142 48,848

165,883 43,191

$

20,059,969

$

20,256,339

$

180,334

453,556

1,345,713 788,970 242,758

1,167,003 754,538 385,859

2,557,775

2,760,956

Unrestricted

8,317,870

8,106,576

Temporarily restricted

8,260,444

8,492,325

Permanently restricted

923,880

896,482

Total net assets

17,502,194

17,495,383

LIABILITIES AND NET ASSETS LIABILITIES

Grants payable Accounts payable and accrued expenses Annuity payment liability Deferred rent Total liabilities

$

COMMITMENTS (Note 6) NET ASSETS

TOTAL LIABILITIES AND NET ASSETS See Independent Auditors’ Report. The accompanying notes are an integral part of these financial statements. 12

$

20,059,969

$

20,256,339

9


STATEMENT OF ACTIVITIES FOR THE FISCAL YEAR ENDED JANUARY 31, 2013, WITH COMPARATIVE TOTALS

TEMPORARILY RESTRICTED

UNRESTRICTED

TOTAL

PERMANENTLY RESTRICTED

2013

2012

SUPPORT AND REVENUE

Contributions

$

5,960,075

$

2,377,873

$

8,337,948

$

7,177,133

Bequests

2,108,599

486,027

2,594,626

3,222,798

Chapters

4,470,652

3,256,773

7,727,425

7,572,676

In-kind public service announcements

6,030,011

6,030,011

Events, net of expenses

317,220

317,220

725,631

Federated campaigns

327,865

327,865

334,174

Investment income

298,915

372,548

99,175

87,411

54,211

27,398

29,180

Other income

73,633

87,411

Gain on beneficial interest in perpetual trusts

$

Change in value of split-interest agreements

( 19,600,748

27,398

77,940)

(

6,116,366

Net assets released from restrictions

6,348,247

(

6,348,247)

Total support and revenue

25,948,995

(

231,881)

77,940)

(

172,401)

27,398

25,744,512

19,042,577

27,398

25,744,512

19,042,577

EXPENSES

Research grants

6,616,367

6,616,367

3,904,240

Patient and community services

5,046,087

5,046,087

4,629,111

Public and professional education

8,878,559

8,878,559

1,859,100

Fundraising

3,000,946

3,000,946

3,269,624

Administration

2,195,742

2,195,742

1,773,152

25,737,701

25,737,701

15,435,227

27,398

6,811

3,607,350

896,482

17,495,383

13,888,033

Total expenses CHANGE IN NET ASSETS

211,294

(

231,881)

NET ASSETS–

Beginning of year

8,106,576

8,492,325

8,317,870

8,260,444

NET ASSETS–

End of year

$

$

923,880

$

17,502,194

$

17,495,383

See Independent Auditors’ Report. The accompanying notes are an integral part of these financial statements.

13


STATEMENT OF FUNCTIONAL EXPENSES JANUARY 31, 2013, WITH COMPARATIVE TOTALS FOR 2012

PROGRAM ACTIVITIES

SUPPORTING ACTIVITIES

TOTAL EXPENSES

PATIENT AND PUBLIC AND  RESEARCH COMMUNITY PROFESSIONAL GRANTS SERVICES EDUCATION TOTAL FUNDRAISING ADMINISTRATION TOTAL

2013

2012

EXPENSES Grant awards

$

5,993,945

$

Chapter support

766,429

$

20,000

1,005,327

Salaries and related expenses

33,524

2,015,958

7

143,898

$

6,780,374

$

1,005,327 1,019,820

3,069,302

1,060,700

104,343

$

1,008,715

2,069,415

3,683

108,026

6,780,374

$

4,043,582

1,005,327

760,579

5,138,717

4,865,099

449,291

427,479

Printing, publications and public service announcements

197,361

341,266

6,030,011

6,030,011

495,597

899,297

1,668,174

1,498,934

In-kind public service announcements

6,030,011

Professional fees and contract services

273,280

Postage and shipping

5

Telecommunications Office supplies Dues and subscriptions

1,804,773

3,472,947

2,898,877

15,618

24,954

40,577

88,858

11,888

100,746

141,323

121,350

143,943

93,228

237,171

90,628

158,134

248,762

485,933

784,787

305,974

327,297

435,972

1,069,243

51,341

50,591

101,932

1,171,175

990,212

9,191

50,339

41,281

100,811

27,741

37,368

65,109

165,920

154,065

21

12,716

59,022

71,759

3,899

9,848

13,747

85,506

35,309

420

17,895

42,831

61,146

13,970

41,634

55,604

116,750

108,838

268,146

268,146

268,146

Rent and occupancy Travel and conferences

305,839

Bad-debt expense (recoveries)

(

75,200)

Depreciation

38,799

8,195

46,994

13,560

24,570

38,130

85,124

153,243

Miscellaneous

12,271

6,587

18,858

46,972

275,326

322,298

341,156

167,007

25,737,701

2013 TOTALS

$

6,616,367

$

5,046,087

$

8,878,559

$ 20,541,013

$

3,000,946

$

2,195,742

$

5,196,688

2012 TOTALS

$

3,904,240

$

4,629,111

$

1,859,100

$ 10,392,451

$

3,269,624

$

1,773,152

$

5,042,776

$ 15,435,227

PERCENTAGE OF TOTAL EXPENSES 2013

25.7%

19.6%

34.5%

79.8%

11.7%

8.5%

20.2%

2012

25.3%

30.0%

12.0%

67.3%

21.2%

11.5%

32.7%

See Independent Auditors’ Report. The accompanying notes are an integral part of these financial statements.

14

100.0% 100.0%


STATEMENT OF CASH FLOWS JANUARY 31, 2013, WITH COMPARATIVE TOTALS FOR 2012 FROM YEAR ENDED JANUARY 31, 2013 2012

CASH FLOWS FROM OPERATING ACTIVITIES Change in net assets Adjustments to reconcile change in net assets to net cash flows from operating activities: Depreciation Realized/unrealized (gain) loss on investments Disposal of equipment Noncash contributions to investments Change in beneficial interest in perpetual trusts Change in value of charitable remainder trusts Changes in operating assets and liabilities: Receivables: Bequests net Chapters, net Pledges, net Other Prepaid expenses Other assets Grants payable Accounts payable and accrued expenses Annuity payment liability Deferred rent

$

( ( (

6,811

76,007 209,576) 4,181 63,879) 30,608) 83,906

$

3,607,350

153,243 20,792 ( (

33,158) 311,998) 12,404

CONSOLIDATED FINANCIAL SUMMARY, NATIONAL OFFICE AND CHAPTERS FOR THE YEAR ENDED JANUARY 31, 2013

(

( (

(

Net Cash Provided by Operating Activities

397,627 1,028,965 374,817) 136,213 74,609 5,657) 273,222) 178,710 34,432

( ( ( ( (

143,101) 920,601

590,524 910,388) 177,143 150,155) 146,381)

TOTAL COMBINED REVENUE

892,329) 580,640) 142,607

Fundraising

236,956

Total expenses

$64,661,521

TOTAL COMBINED EXPENSES Research Other program activities General & administration

$ 6,616,367 40,164,177 9,137,186 $ 5,414,990 $61,332,720

1,915,970 Change in net assets:

$3,328,800

CASH FLOWS FROM INVESTING ACTIVITIES 1,534,182

Proceeds from sold and matured investments

2,193,407

Purchases of investments

(

1,850,594)

(

6,574,785)

Purchases of property and equipment

(

136,447)

(

40,098)

(

452,859)

(

4,421,476)

467,742

(

2,505,506)

Net Cash Used In Investing Activities NET CHANGE IN CASH AND CASH EQUIVALENTS CASH AND CASH EQUIVALENTS–Beginning of year CASH AND CASH EQUIVALENTS–End of year

6,834,970 $

7,302,712

The consolidated summary has not been audited or reviewed by the auditors and is not part of their financial reports.

9,340,476 $

See Independent Auditors’ Report. The accompanying notes are an integral part of these financial statements.

6,834,970 15


NOTES TO THE FINANCIAL STATEMENTS JANUARY 31, 2013, WITH COMPARATIVE TOTALS FOR 2012

NOTE 1–Description of Operations and Summary of Accounting Policies THE ASSOCIATION The Amyotrophic Lateral Sclerosis Association (The Association) was organized in 1985 through the merger of its predecessors, The Amyotrophic Lateral Sclerosis Society of America and The National ALS Foundation, Inc. The Association’s principal purpose is to fund research directed at finding the cause and cure for the disease amyotrophic lateral sclerosis (ALS), commonly known as “Lou Gehrig’s Disease,” and to provide educational and other services to patients and their families, health care professionals, legislators, and local communities, principally through the dissemination of informative literature and presentation of public awareness and advocacy programs and scientific symposiums and by accrediting, with local chapter support, activities of patient care clinics known as ALS Association Centers. The Association is a not-for-profit, voluntary health organization, exempt, together with its affiliated chapters, from federal income taxes under Section 501(c)(3) of the Internal Revenue Code (the Code). The ALS Association and its chapters are classified collectively as a publicly supported charitable organization under Section 509(a)(1) and qualify for the maximum charitable contribution deduction by donors under Section 170 (b)(1)(A)(vi) of the Code. These financial statements do not include the accounts of affiliated chapters since, subject to their agreements with The Association, they are independently controlled by their own governing boards.

16

BASIS OF PRESENTATION The accompanying financial statements include a statement of financial position that presents the amounts for each of three classes of net assets–– unrestricted net assets, temporarily restricted net assets, and permanently restricted net assets––based on the existence or absence of donor-imposed restrictions, a statement of activities that reflects the changes in those categories of net assets, and a statement of functional expenses that associates expenses with service efforts.

USE OF ESTIMATES The preparation of financial statements in conformity with accounting principles generally accepted in the United States of America requires management to make estimates and assumptions that affect the reported amounts of assets and liabilities and disclosure of contingent assets and liabilities at the date of the financial statements and the reported amounts of revenues and expenses during the reporting period. Actual results could differ from those estimates.

Unrestricted net assets include those net assets that may be used by The Association for any of its programs or administrative support. Temporarily restricted net assets include those net assets whose use by The Association has been limited by donors to specified purposes or time restrictions. Permanently restricted net assets include those net assets that must be maintained in perpetuity.

CASH AND CASH EQUIVALENTS Cash equivalents are defined as money market funds and other highly liquid investments with original maturities of three months or less at the date they are purchased.

PRIOR-PERIOD INFORMATION The financial statements include certain prior-year summarized comparative information in total but not by net asset class. Such information does not include sufficient detail to constitute a presentation in conformity with accounting principles generally accepted in the United States of America. Accordingly, such information should be read in conjunction with The Association’s financial statements for the year ended January 31, 2012, from which the summarized information was derived.

INVESTMENTS IN MARKETABLE SECURITIES Investments are initially recorded at cost if purchased, or at fair value at the date of donation if contributed. Subsequent to acquisition, investments are reported at their fair value. Investment income and realized and unrealized gains and losses are recognized as unrestricted net assets unless their use is temporarily or permanently restricted by donors to a specified purpose or future period. The fair value of investments in securities traded on a national securities exchange are valued at the closing price on the last business day of the fiscal year, whereas securities traded on the over-the-counter market are valued at the last reported bid price.


NOTE 1–Description of Operations and Summary of Accounting Policies– CONT. FINANCIAL RISK The Association maintains cash in bank deposit accounts which, at times, may exceed federally insured limits. The Association places its cash with high quality financial institutions and has not experienced any losses in such accounts. The Association’s investments are exposed to various risks, such as market and credit risks. Due to the level of risk associated with such investments and the level of uncertainty related to changes in the value of such investments, it is at least reasonably possible that changes in risks in the near term could materially affect investment balances and the amounts reported in the financial statements.

CONTRIBUTIONS AND BEQUESTS Contributions, including endowment gifts and pledges, are recognized as support in the period received or pledged. Unconditional promises to give that are expected to be collected within one year are recorded at their net realizable value. Unconditional promises to give that are expected to be collected in future years are recorded at the present value of their estimated future cash flows. Amortization of the discount to present value is included in contribution revenue. Conditional promises to give are not included as support until the conditions are substantially met. Bequests are recognized at the time The Association’s right to them is established by a court and the proceeds are subject to reasonable estimation. Donations and bequests received with donor stipulations as to their intended use are reported in the statement of activities as restricted support. Temporarily restricted net assets are reclassified as unrestricted net assets when restrictions are met.

Contributed services are reported at fair value in the financial statements for voluntary donations of services when those services (1) create or enhance nonfinancial assets or (2) require specialized skills provided by individuals possessing those skills and are services which would be typically purchased if not provided by donation. The Association receives a substantial number of volunteer hours donated by individuals in program services and fundraising campaigns which are not recorded in the financial statements. Donated materials are recorded at their fair value at the date of the gift. If donors stipulate how long donated assets must be used, the contributions are recorded as restricted support. In the absence of such stipulations, contributions of goods are recorded as unrestricted support. Beneficial interests in perpetual trusts are recognized as revenue when The Association is notified of the trust’s existence in accordance with the terms and provisions of the trust. The fair value of the contribution is estimated using the fair value of the assets contributed to the trust, unless facts and circumstances indicate that the fair value of the beneficial interest differs from the fair value of the assets contributed to the trust. The contribution is classified as temporarily or permanently restricted support, depending on the nature of donor restriction, and annual distributions from the trust are reported as investment income that increases unrestricted net assets. At each reporting date, the beneficial interest is remeasured at fair value using the same valuation technique that was used to measure the asset initially and the change in fair value is recognized as temporarily or permanently restricted gains or losses. The Association is the beneficiary of two charitable remainder trusts for which The Association is not the trustee. The Association recognizes the present value of the estimated future benefits to be received

when the trust assets are distributed as temporarily restricted contribution revenue and as a receivable. Adjustments to the receivable to reflect amortization of the discount and revaluation of the present value of the estimated future payments to the lifetime beneficiary are recognized in the statement of activities as change in value of split-interest agreements.

IN-KIND CONTRIBUTIONS The Association produces and distributes public service television announcements that focus attention on education and awareness. These public service announcements are distributed to media stations nationwide and run free of charge. The Association has contracted with an independent outside agency to track the date and time that each public service announcement runs, and the value of the announcements is based on the date, time and market. For the year ended January 31, 2013, The Association recorded $6,030,011 of contributed public service announcements. CHAPTER SUPPORT The Association has a revenue-sharing practice with affiliated chapters. Chapter support is recognized as support revenue when earned by the affiliated chapter based on the current revenue-sharing plan. From time to time, The Association may provide loans for working capital needs to affiliated chapters. Generally, repayment of the loan begins one year from the date of the last loan installment. In the current year, The Association entered into three zero-interest twenty-year loans with three affiliated chapters. These loans to affiliated chapters are discounted at three percent based on the long-term Applicable Federal Rate (AFR), which is what the IRS would use to determine the unstated interest rate. 17


NOTE 1–Description of Operations and Summary of Accounting Policies– CONT.

NOTE 2–Investments in Marketable Securities– CONT.

PROPERTY AND EQUIPMENT Expenditures for property and equipment are capitalized at cost or, for donated assets, fair value at the time of donation. Depreciation and amortization is provided on a straight-line basis over the estimated useful lives of the related assets, ranging from three to five years.

Investments income consists of the following:

RESEARCH GRANT EXPENSE Conditional research grants (see Note 6) are expensed by The Association as the researchers substantially meet the terms and conditions of the grant during the grant period. Unconditional research grants are expensed when made. FUNCTIONAL EXPENSES The costs of providing various programs and activities of The Association have been summarized on a functional basis in the statements of activities and functional expenses. The majority of expenses are directly identified with a program, activity or supporting service and allocated accordingly. Expenses not directly identified are allocated among programs, activities and supporting services based on the judgment of management. ALLOCATION OF JOINT COSTS The Association incurred joint costs for informational mailings that included fundraising appeals. The Association is permitted through accounting guidance to allocate to its programs a portion of its costs associated with its fundraising efforts. Costs are allocated between program and fundraising based on the percentage of words used for each purpose in a mailing. For the year ended January 31, 2013, joint costs totaled $767,012 and $238,468 for fundraising and program services, respectively.

INCOME TAXES The Association is exempt from federal income taxes under Internal Revenue Code Section 501(c)(3) and state taxes related to revenue received in connection with exempt programs. The Association recognizes the financial statement benefit of tax positions, such as its filing status as tax-exempt, only after determining that the relevant tax authority would more likely than not sustain the position following an audit. The Association is subject to potential income tax audits on open tax years by any taxing jurisdiction in which it operates. The statute of limitations for federal purposes is three years and for state purposes is generally three to four years.

Interest income $ 162,972 $ 119,967 Realized/unrealized 209,576 ( 20,792 ) gain (loss) $ 372,548 $ 99,175

NOTE 3–Chapter Receivables Receivables from Chapters consist of the following:

SUBSEQUENT EVENTS JANUARY 31, The Association has evaluated subsequent events 2013 2012 and transactions for potential recognition or disclosure $ 1,864,382 $ 3,308,665 through June 18, 2013, the date financial statements Revenue sharing Reserve for ( 123,436 ) ( 365,435 ) were available to be issued. doubtful collection 1,740,946 2,943,230 NOTE 2–Investments in Marketable Securities Loans receivable 1,182,910 781,611 Investments in marketable securities consist of the Discount to ( 227,980 ) following: present value 954,930 781,611

JANUARY 31, 2013 2012

Mutual funds $ 3,267,077 $ 2,955,154 Equity securities 1,930,040 1,697,326 Corporate bonds 1,113,379 1,070,521 Government agency obligations 675,348 619,883 Government backed 134,734 175,362 mortgage securities Corporate mortgage securities 193,709 172,013 Others 34,161

18

FOR THE YEAR ENDED JANUARY 31, 2013 2012

$ 7,314,287 $ 6,724,420

$ 2,695,876 $ 3,724,841


NOTE 4–Pledges Receivables

NOTE 6–Commitments

The Association anticipates collection of outstanding pledges receivable as follows:

RESEARCH GRANTS The Association enters into conditional commitments semiannually to award scientific research grants. Research grants are awarded after review by The Association’s Scientific Review Committee and approval by the Board of Trustees. Subject to an annual review and reapproval process, these grants generally cover a period of one to three years.

JANUARY 31,

Gross amounts due in: Less than one year $ One to five years More than five years Less discount to ( present value Less reserve for ( uncollectible pledges $

2013

2012

549,363 $ 273,888 238,025 203,700 15,000 15,000 802,388 492,588 19,948) ( 24,011 ) 86,221) ( 147,175 ) 696,219 $ 321,402

Subject to the grantees’ meeting the applicable terms and conditions timely, conditional grants awarded to date will become payable as follows:

Minimum rental payments due under the leases are as follows: YEAR ENDING JANUARY 31,

2014 $ 520,544 2015 646,748 2016 605,965 2017 321,788 2018 330,638 Thereafter 806,208

$ 3,231,891

YEAR ENDING JANUARY 31,

NOTE 5–Property and Equipment

Rent expense under office and equipment leases 2014 $ 4,763,812 amounted to $524,562 and $784,787 for the years 2015 1,482,229 ended January 31, 2013 and 2012, respectively. 2016 464,149 In January 2013, The Association entered into a sublease agreement with a Chapter which termi $ 6,710,190 nates November 2015. The Association expects to receive rental proceeds of approximately $60,000 in Except as previously provided for by restricted gifts each of the next three years under this agreement. (see Note 7),The Association’s ability to meet these

Property and equipment consists of the following:

grant commitments may be dependent on future contributions to be received.

Amounts presented above have been discounted to present value using rates ranging from 1.54% to 4.75%.

JANUARY 31,

2013

2012

Furniture and equipment $ 769,425 $ 746,514 Software 314,806 314,806 Leasehold improvements 185,327 185,327 1,269,558 1,246,647 Less accumulated ( 1,148,278) ( 1,080,764 ) depreciation and 121,280 165,883 amortization Construction in process 100,862

$ 222,142

$ 165,883

LEASES The Association leases offices in California, Illinois, New Hampshire and Washington, D.C., under noncancellable operating leases expiring November 2015 and June 2020, respectively. The leases require monthly rental payments and contain certain escalation clauses. In addition,The Association pays a pro-rata share of real estate taxes and other operating expenses.

PURCHASE COMMITMENTS The Association has entered into a purchase agreement with a hotel for guest rooms relating to its annual conferences. Purchases under these agreements are expected to approximate $531,000 and $451,000 for the years ending January 31, 2014 and 2015, respectively. Should the agreement be cancelled, The Association may be subject to cancellation fees contingent on the ability of the rooms to be resold.

The Association also leases certain office equipment under leases expiring at various dates through January 2017. 19


NOTE 7–Temporarily Restricted Net Assets

NOTE 10–Fair Value Measurements

As of January 31, 2013, net assets are temporarily

The Association uses fair value measurements to record fair value adjustments to certain assets and liabilities and to determine the fair value disclosures. The fair value of a financial instrument is the price that would be received to sell an asset or paid to transfer a liability in an orderly transaction between market participants at the measurement date. Fair value is best determined based upon quoted market prices. However, in many instances, there are no quoted market prices for The Association’s various financial instruments. In cases where quoted market prices are not available, fair values are based on estimates using present value or other valuation techniques. Those techniques are significantly affected by the assumptions used, including the discount rate and estimates of future cash flows. Accordingly, the fair value estimates may not be realized in an immediate settlement of the instrument. The Association groups its assets and liabilities measured at fair value in three levels, based on the markets in which the assets and liabilities are traded and the reliability of the assumptions used to determine fair value.

restricted for the following purposes: Research awards $ 6,255,022 Other programs 2,005,422 $ 8,260,444

NOTE 8–Permanently Restricted Net Assets Permanently restricted net assets includes the beneficial interests in two trusts that The Association does not administer. The investments of each trust are administered by a trustee, who is independent of The Association, and distributions are made to The Association in accordance with the trust agreement for each trust. The beneficial interests in these trusts approximated $684,000 and $657,000 at January 31, 2013 and 2012, respectively. Permanently restricted net assets also include research endowment principal of approximately $240,000, which is held in perpetuity to generate earnings to support research expenditures.

NOTE 9–Employee Benefit Plan The Association maintains a 401(k) defined contribution plan, which is subject to limitations set forth by the Internal Revenue Code. The plan covers all employees who meet the requirements of the plan. The total expenses relating to the plan were $189,887 and $110,755 for the years ended January 31, 2013 and 2012, respectively.

Level 1 inputs are quoted prices (unadjusted) in active markets for identical assets or liabilities that The Association has the ability to access at the measurement date.

• Level 2 inputs are inputs other than quoted prices included within Level 1 that are observable for the asset or liability, either directly or indirectly. • Level 3 inputs are unobservable inputs for the asset or liability. The level in the fair value hierarchy within which a fair measurement in its entirety falls is based on the lowest level input that is significant to the fair value measurement in its entirety. The following table presents assets and liabilities that are measured at fair value on a recurring basis at January 31, 2013:

FAIR VALUE MEASUREMENTS AT JANUARY 31, 2013 LEVEL 1 LEVEL 2 LEVEL 3 TOTAL

ASSETS

Investments in marketable securities $ 5,197,117 2,117,170 $ 7,314,287 Beneficial interest in perpetual trusts $ 970,275 970,275 Contributions receivable from charitable remainder trusts 207,483 207,483 LIABILITIES Annuity payment liability ( 788,970) ( 788,970)

20

The three levels of the fair value hierarchy are as follows:

$ 5,197,117

$ 2,117,170

$ 388,788 $ 7,703,075


CORPORATE PARTNERS Total Contributions from Corporations - $1.18 million

$100,000+ BAYADA Home Health Care Pride Mobility Products Corporation Sanofi US

$25,000 – $99,999 Avanir Pharmaceuticals Biogen Idec ICAP Energy, LLC Pfizer Pharmaceutical Research and Manufacturing Association PostNet

$5,000 – $24,999 Biotechnology Industry Organization Kaufman, Hall & Associates, Inc. Merck & Co., Inc. Occidental Petroleum Permobil Vitas Hospice Services, LLC

21


THE LEGACY SOCIETY The Legacy Society was established to honor those individuals who, through their generosity of spirit, have included The ALS Association in their long-term financial and philanthropic plans. We gratefully acknowledge their commitment to our core mission of advancing critical ALS research, providing compassionate care services and increased public policy efforts in our ongoing quest for a world without ALS. * Charter Member / † Deceased Joe and Eleanor† Codomo in loving memory of our son, Robert Vincent

Anonymous (27)

Arthur H. Barrett†

Martha† and Bert† Brown

Anonymous in memory of Bernard Johnson

Dorothy Barth† Mrs. Margaret A. Beans*

Mady Brown in loving memory of my parents, Rose and Selwyn Cohen

Joe Ann Bearly†

Nelle H. Bruce†*

Beverly E. Collingwood in loving memory of Alfred A. Keith

Mr.† and Mrs.† Avery J. Beer*

Margaret A. Bruening

Beckie and David Cooper

Rick Beers*

Frederick and Elizabeth Burcaw in memory of Iva Burcaw and Ralph Frederick

Christine Creed†*

Anonymous in loving memory of William J. L’Heureux Anonymous in loving memory of Ross Anonymous in loving memory of my father, Henry M. Unger

Dr. Kirk Benson

Ethel Adler in memory of Adam

Rhea M. Berger

Kent and Dara Alexander*

Terry L. Betzelberger*

Marianne Allgaier in memory of Edwin Allgaier

Christian Olav Bing

Thomas P. Anderson, Jr.* Dorothee P. Angel* Anna M. Arnold in loving memory of my son, John W. Arnold Mrs. Dorothy Austin Mary Beth Baker in memory of my husband, Gary Margot K. Baldwin in memory of Irene Billingham and Joseph Almirall Erica and Robert Balint Lester Baltimore in memory of my wife, Sue Levering Jeff and Trina Bandelow Maureen Barber Hill in memory of Wayne Barber, Sr. Fanny Barnes† Lawrence R.† and Isabel† Barnett Marvin and Dulce Barofsky

Sharon T. Betzelberger*

Gary L. and Elizabeth M. Bishop in loving memory of Alex McKelvey Rolf F. Bjelland in memory of Carolyn B. Bjelland Robert J. Bjorseth* Ronald J. Blaney in loving memory of my mother, Rhea Blaney Eileen Kay Blau in memory of my beloved husband, Robert W. Smith

Mr. and Mrs. Denny Burroughs in loving memory of Virginia Doty Burroughs Margaret M. Busch† in loving memory of my granddaughter, Stephanie Vetvick Hunting Mrs. Meta Calise†* in memory of Vincent Joseph Calise, beloved husband and father

Elizabeth Crossley in loving memory of my sister, Gerlinde Lindner Will Cutspec†* Barbara Dabul, Ph.D.* in memory of Jack Magennis Lauren A. D’Alessandro to honor Connecticut PALS and families Ruth S. Dann* in memory of Elliot W. Dann

Cape Rider Trust in memory of Barbara Lee Schneider

The Honorable Jay Daugherty and Mrs. Lyn E. Daugherty*

John C. Carmody

Helen K. de Kanter†*

Mr. John H. Carrington in memory of my brother, Dick Carrington

Therese Decker

Mr. Robert F. Cavedo*

Ellen Dennis

Jayne M. Cawthern

Harold and Elizabeth Dettinger in honor of Emma Dettinger

Irene P. Bolton in memory of Maureen Cantwell, sister-in-law

Doris M. Charles in honor of Richard Charles

Mrs. Haroldyne Dickinson† in memory of my husband, Howard I. Dickinson

Doris M. Bomgardner

Don G. Chatlien in loving memory of my wife, Doree M. Chatlien

V.E.† and M.H. Dornbach, Jr.*

Gary and Amy Bobo in memory of Margaret B. Peugeot

Carol J. Booth and Family in memory of E.G. Booth Louis G. Booth† in loving memory of my wife, Katie Joan S. Borowsky

Mrs. Mary Thuss Cheney† in loving memory of my mother, Gladys F. Thuss

Charlotte S. Dutka† in memory of my husband, Len Dutka, with thanks to former patient representative Mary Lyon

Dr. and Mrs. Richard Chessick in loving memory of Edward Friedman

Elaine Dutka in celebration of the life of my dad, Leonard Dutka

Lance Christian

Catherine E. Easter

Mrs. Michael W. Bowen†

Michael Citra†*

Mr. and Mrs. Schuyler L. Brooks

Richard L. “Dick” Clark in memory of Donna Clark

Alfred D. Egendorf† in memory of son Frederic

Andrew T. Brophy 22

Betty J. Burritt†*

Selwyn S. Cohen†*

Kathleen M. Elkins, Ed.D. in loving memory of my husband, Robert J. Elkins


THE LEGACY SOCIETY CONT. Peggy Ellertson in memory of my father, Thomas L. Harsell, Jr. LaVon Elsen in loving memory of my husband, Bernie Elsen

Roger and Maxfalda Gleckman

Emma M. Hohlfield

Rose B. Gorin†*

Mimi Holcombe in loving memory of my mother, Anne S. Cowie

Linda Gottlieb*

Sheila† and Richard Essey*

Cynthia A. Greene

Mr. and Mrs.† Glen Ethier*

Mrs. Jane T. Gregory†* in memory of S.L. (Paul) Gregory

Marilyn J. Fall in memory of Wayne L. Stiede

Marie L. Holle in loving memory, Clayton R. Demo Annie M. Holley

The Reverend Joseph Grosko

Burt Holtzman in memory of Pauline Holtzman

Evelyn J. Ferngold in loving memory of my mother, Dora Broomfield Ferngold

Karla Sue Gunn and John B. Gunn*

Ms. Sally Horner

Elizabeth A. Guon†*

Frank Ferrara†

Barbara M. Hadley* in memory of Charles E. Younkman

Barbara Hummel in loving memory of Mark L. Tomchin

Allen L. Finkelstein Donald H. Flanders John F.† and Mary Louise† Fogarty* Jane Fosler† in loving memory of my husband, Keith Fosler Ruth J. Fox† Scott Fox in loving memory of Arthur and Vera Fox Patricia M. Franks Mary Kay† and John G. Fry Howard and Jodie Furbee in celebration of the life of Velma Zeigler Folck Floyd Gadt* Robin R. Ganzert in memory of Michael Aheron Eugene R. Gardiner John H. Gauger in memory of my wife, Sandy Nancy George in memory of my beloved husband, Ernest George Donna Giardina in loving memory of Pam Maxwell Marbeth W. Gibson in memory of Thomas C. Whitney, beloved brother Jane H. Gilbert Gillett Family Trust

Herbert A. Hale Stanley and Maureen Hall in memory of my mother, Helen Coulthard Wendy L. Hall to honor my father, Ty Hall, who gave me so much love Terry Halpin* Kim A. Hanna Velma L. Hanson† in loving memory of my husband, Richard H. Hanson

Kimberly Johnke

David and Debra Hirschfeld in memory of Mary Elizabeth Roche´ Alfred J. Hoffman†*

Gordon L. Larsen Syble Early Lashley in memory of my mother, Irene Sitton Early

Ray Jordan in loving memory of my wife, Sally A. Jordan

Martha and Brian Law in loving memory of John Hovenden

Mary S. Kassabian

Hazel M. Lawson†*

Colonel Jacquelin J. Kelly (Retired)

Gary A. Leo

James and Nancy Kenzik

Luis E. Leon in memory of Clemencia Leon

John R. Kicklighter in memory of Vera Mae Kicklighter

Chuck and Mares Hirchert in loving memory of my mother, Margaret Westbrook Hirchert

Mrs. Mildred N. Landecker in memory of Dr. Louis Landecker

Orville E. Johnson†*

Michael W. Havlicek*

Kent Hill in memory of my wife, Sandra Hill

Cindy La Montagne in loving memory of my amazing husband, David E. La Montagne, Sr.

Ralph LaPlant

John C. Keyes†

Eleanor N. Hill†

Ms. Andrea Krill in loving memory of my father, Peter Krill

Floyd N. Iverson† in loving memory of my wife,Viola M. Iverson

Philip† and Joan† Hart*

Jack Hilderbrand*

Melanie Krebs

Peter B. Landecker* in memory of Dr. Louis Landecker

Rosamond Keough in loving memory of John J. Keough

August G. Hiebert†

Wilson N. Krahnke

Wilbur Hutchins†

William A. Harrison, Jr.* in loving memory of my life partner, Michael B. Huntley

Karl W. Helft in memory of Raquel P. Helft, loving wife and mother

Marie K. Kovacic† in memory of my daughter, Katherine Kovacic Dolley

Shelley King in memory of Lynn Smith of Maine Lynn M. Klein* Sherry and Andy Klein Marvin† and Joan Kloehn Cynthia Knoche Dorothy Komarek Shannon and Joe Komsky in loving memory of Barry Komsky Valerie A. Konkle in memory of my sister, Barbara Konkle Kelly

Kenneth E.† and Barbara J. Levin in memory of Gail Levin Peterzell Louis and Jocelyn Libby Karen K. Lienau in loving memory of my mother, Thelma C. Kahler Thelma Lietzan† John M. Lima in loving memory of my wife, Emma Sherratt Lima G. Mary Lincoln in loving memory of Bob Lincoln Margaret F. Londy† in loving memory of my sister Virginia Rashbaum Donald R.† and Mary Lois† Long Sherry Lougher in loving memory of my mother, Mildred Erickson Hatton 23


THE LEGACY SOCIETY CONT. Dee Dee Lowland* Marjorie MacClean in loving memory of Edward W. MacClean Gloria Salerno Maehl and Gary Maehl in loving memory of Dr. Charles Salerno Nicolas Mares† in loving memory of Delia, dear wife and mother Barbara Martin in loving memory of my husband, Wayne O. Martin

Donald F. Mills in memory of my wife, Edna Bauer Mills

Anamarie Neumiller in memory of my father, Louis B. Neumiller

John E. Perry, Jr. in loving memory of Charlotte P. Gromberg

Mr. and Mrs. Joseph Miloscia* in loving memory and in honor of Mrs. Patricia Ciccarello

Gerda Newbower†

Mary Jo Peyton in memory of my brother, John E. Peyton, Jr.

Mrs. James S. Mims Eileen Mittleman in loving memory of my father, Ben Mittleman Margaret and Walter Molony

Leonora O. Masterson

Heather and Garry Montag

Laila Matthews

Maria Montalbano

Edith Mattmiller†

Randy Vance Morgan in honor of my mother, Mahaley Sudie Morgan

John† and Denise Matuszewski John A. Mayott†*

Annette and Stuart Morris

Jane L. McBride†*

J. Kent Morrison in loving memory of my wife, Jeanne Morrison

Rosezell McCarty-Oliver in loving memory of Lawrence McCarty

Karen A. Moschetto in memory of my uncle, Arthur Johnson

Aubrey McCauley

David Moses and Lisa Roberts

C. Thomas McClintic and Sandra McClintic

Lillian Moskowitz†*

Susan and Kevin McCormack

Wesley W.† and Lynne E.† Movitz

Ms. Susan McCray*

Louis Mufich in loving memory of my wife, Minerva J. Mufich

Laura McCrum†* Doris L. McGowan† in loving memory of my husband, Jim Mrs. Albert McNash in loving memory of my husband, Albert H. McNash Mrs. Mable Messer†* Paul B. Micheel†* in memory of Viola Tina and Trygve Mikkelsen in memory of Sheila Essey

Mr. and Mrs. Larry Munoz in loving memory of my dad, Reuben Munoz, Sr. Sherry L. Murray in memory of my husband, CDR Rick Murray, USN (Retired) Mrs. John W. Musick in loving memory of my son, Charles Whitley Musick

Kathleen McGuire Pierce in loving memory of six family members with ALS

Florence R. Neyer

Anita M. Pollak in memory of Mervin Channing Pollak

Ken Nicholls Rodney W. Nichols Richard A. Nimphie in memory of Doris E. Nimphie Earle and Catherine O’Donnell Lynn C. O’Hara Doris L.† and John M.† O’Hare* Benjamin S. and Dorothy F. Ohrenstein* Blanche J. Owens in memory of my husband, Joseph D. Owens Elouise Pacitti† in memory of Robert, loving husband and father Lauraine Painter†* in memory of Edwin J. Painter Richard Palank

Sonja Nelson honoring Carrie Elene Layel Ruth Neuman†*

Ramona L. Pressley in memory of my husband, William F. Brooks; and nieces Karen, Laura, and Susan, and nephew Brian Rose Marie Proietti in loving memory of Mark Savory Robin L. Quigley, Captain U.S. Navy (Retired) in honor and in memory of Joe Martin Dean Rasmussen* Mary Alice Reddick Mrs. Martha N. Rees† in memory of Deacon Paul J. Rees Bruce† and Sherrie Reid

Leighton Palmerton in memory of my wife, Ann A. Palmerton

Harry E. Rice, M.D.*

Mrs. Harry G. Pantages The Parsons+ Family Trust* in loving memory of Hilda Freese

J.R. and Margy Patterson in loving memory of Linda M. Patterson

Anita Nelkin† in loving memory of my husband, William Nelkin

Lillian B. Potts†

Margaret V. Reustle in loving memory of my husband, William

Evelyn Nasielski

Charles and Nancy Miller in loving memory of Stanley Drexler

Viola E. Porter†

Thomas W. Palmer

Catena and Frank Passalacqua

Alice Nedelec* in loving memory of Marie A. Nedelec

Ellyn C. Phillips

Sean Newton* for Lowell Newton

Mrs. Rena L. Myrick in loving memory of my husband, F. Guilford Myrick

Marie A. Mildram

24

Genevieve Newton†* for Lowell Newton

Katherine P. Payne† in loving memory of my brother, Stuart MacMackin Warner A. Peck †* Andrea L. Perr in memory of my brother, Geoffrey S. Perr Mrs. David V. Perry*

Kelli Richmond† Mary C. Riggs Mrs. Helen T. and Ms. Jennifer T. Rimerman in loving memory of Morton W. Rimerman Carl and Becky Rizzuto in loving memory of our mom, Antoinette Carvelli Ms. Jean M. Roldan in honor of Paulette Gasne N. Anthony Rolfe Juan C. Ros Mr. Richard Rose† Gerald† and Concetta Ross


THE LEGACY SOCIETY CONT. Richard S. Roth Janis M. Rothermel Jeff Rowe in memory of Frank Rowe Richard J. Ryan† Ronald R. Salbenblatt† Mrs. Annette Powell Salerno in memory of Charles, beloved husband Thomas A. Scamuffa

Kirsten Anne Nystrom Snyder and Brandt Edward Snyder Marion J. Solow† Theresa Ridgway Soracco Mr. and Mrs. Robert L. Sorenson* in memory of Wayne L. Stiede James O. Speer†* Dr. and Mrs. Charles J. Spengler

Carol L. Schaerer in loving memory of my sister, Robertine Massey Boyer

Laura and Sarah Stanley in memory of my mother, Sylvia R. Stanley, and all the members of her family who have suffered from ALS

Robert L. Schenck*

Karen Starleaf-Abounayan*

Frances Friedman Schloss in loving memory of my late husband, Justin Friedman Ben F. Sears John and Barbara Seibert Norma M. Shearer† in loving memory of Ralf De Mouthe Edythe B. Sheinbaum in loving memory of my husband, Milton Judith Shelton Mrs. Corliss Sherry my heart, my love––Clayton L. Sherry Nancy E. Shire Ruth Shively in loving memory of my son, Michael Shively Marilyn Simon-Gersuk and David Gersuk Mary Smiley in memory of my son, Steven Smiley Elliot and Linda Smith in loving memory of my father, William Wallace Smith Frances Virginia Smith

Steven L. Ross† and Carol L. Thacher* Kathryn and James Thomas Lori Tiller

Rev. Charles W. Ward Renee and Charles, love always/together always C.J. Ward

John Timko

Clifford W. Wauters, M.D.† in loving memory of Helen, beloved wife and mother

Mary Nancy Todd in loving memory of my mother, Nancy Dunn Procter

Sam† and Karolyn Welty*

Dorothy E. Travinek in loving memory of my uncle, Michael Smiles Judith and David† Travis Monte Tudor-Long Marie E. Turianski in memory of my husband, Gerald W. Turianski

Mr.† and Mrs.† Carlyle Whistler in loving memory of my father, Everett Garrison Claire Whitaker in memory of my son, E.F. Wallengren Jean G. White in memory of my beloved mother, Marie Griffin, and my loving sister, Elaine Gibler

Mr.† and Mrs. Gordon F. Stewart* in memory of Jerome S. Love, M.D.

Doug† and Loretta Turner

Ken and Alma Wiegand in loving memory of Toshiko Densford

Elisabeth Twist

Ralph R. Stillwagon in loving memory of Eleanor Stillwagon, dear mom

Clayton Williams

Mr.† and Mrs. Roy Uhlman

James S. Williams†

Mert Urness in memory of brother Gary A. Urness

Laural Winston* in memory of Aunt Rubye and Uncle Bob Harmon

Vincent G. Uttley* in celebration of the life of Michael Rice Bertschy

Sharon Wlosek

Elaine F. Stone†* Larry Stough honoring Carrie Elene Layel Clifford E. Strachan* in loving memory of my wife, Helen Virginia Strachan

Nancy Van Wyhe in loving memory of my husband, Conley Van Wyhe

James and Prudy Streem Trust

Frank C. and G. Maxine Vasek*

Peter Strugatz*

Rosa C. Vàsquez

Gregory M. Stuart a tribute to my friends who have lived with ALS

Electra Venetsanos†*

Mr.† and Mrs. Theodore H. Vandling

Mary Sylvia Wolfrey† in loving memory of my husband, Bill Wolfrey Harriet M. Wollerstein Victor L. Wolmer† Agnes C. Wood† Darlene Woodall in loving memory of my mother, Arlene Rushing Lowe

Judy Stuart in memory of my husband, Alan A. Stuart

Henry Vera in memory of my loving wife, Lorraine Vera

Glenn Suhr

Charles H. Viens*

Ed Sukla

Ellen C. Voie

Katherine M. Wulf† in loving memory of my dear friend, Floyd V. Alguire

George W. Wagner*

David W. Wurth

Robert F. Wallace in memory of Marilyn Battelli, cherished wife, mother, daughter and beloved sister

Alonzo S. Wyatt†*

Mr.† and Mrs.† Daniel J. Walsh*

Mrs. Robert E. Zimmerman†

Pauline Sims Swain† in memory of my friend, Koziell Poklewski. He lived with ALS for 12 years.

Merrill K.† and Hazel P.† Smith

Jerry Taylor in celebration of the life of Russell Jackson

Patricia Snyder and Family in memory of Thomas T. Snyder

Maybelle M. Taylor† in loving memory of Frederick A. Taylor

Kenneth Workman and Jennifer Workman Living Trust in memory of my beloved uncle, Gilbert Klein, D.D.S.

Patrick M. Ziegenhorn

Lucille J. Walter 25


THE LAWRENCE R. BARNETT RESEARCH COUNCIL The Research Council was named in honor of Lawrence R. Barnett, founding chairman of the organization, who became affectionately known as the “grandfather” of The ALS Association for his tireless devotion to finding a cure. We are honored to recognize the distinguished members of the Lawrence R. Barnett Research Council, who are listed below. Through their commitment and generous financial support, our global research program continues its relentless pursuit of treatments and a cure for ALS. * Charter Member / † Deceased

VISIONARY

LEADER

PARTNER

$5,000 to $9,999

$1,000 to $4,999

E.F. Wallengren Hoopfest for ALS Research The E.F. Wallengren Fund for ALS Research

Anonymous

Bruce and Janet Adler Rosenberg Research Fund

Lawrence R.† and Isabel† Barnett

The Wasily Family Foundation in memory of Ms. Anne V. Wasily

Atkins School District in memory of Jennifer Virden-Holley

Lawrence R. Barnett, Esq.

INNOVATOR

The City of Avondale Estates

The David Vickter Foundation

$20,000 and above Sally Akin Estate of Gary Wayne Akin

$10,000 to $19,999 The Frankel Family in memory of Virginia Casey Frankel and Marian Jindra

Mr. and Mrs. Robert V. Abendroth, Esq. in memory of Lawrence R. Barnett

Kim and Susan Henry in memory of Elbert Henry

Mary Jean Blanton in honor and in memory of John C. Blanton

Bob and Beckie Kevoian in honor of Duane Parker

Dr. Harold and Phyllis Brourman The Neil Brourman, M.D. ALS Research Fund

Robert Luongo ALS Fund, Inc.

Mr. Thomas E. Caestecker

Barbara and Buddy Freitag The Neil Brourman, M.D. ALS Research Fund

Barbara Hummel Mark L. Tomchin Research Fund

Phi Delta Theta International Fraternity’s Iron Phi Program

Donald F. Mills in memory of my wife, Edna Bauer Mills

Helen C. Saults†

Ellyn C. Phillips in loving memory of my husband, Alan, and my parents, Morton and Malvina Charlestein

Frances Friedman Schloss Barbara Vanderbilt Peck/Justin Friedman Fund for Neurological Research Corinne Schwartz in memory of Dr. Joel Kleinman

The Scrivan Family Foundation The Michel A. Scrivan Family Fund Mr. and Mrs. James S. Whitten in honor of Mr. Steve Wilson

Lili and Jon Bosse The Neil Brourman, M.D. ALS Research Fund

Stacey Kors in memory of Frances Kors

Joan K. Bower-Oakland†

Pachulski, Stang, Ziehl & Jones Harry F. Davis ALS Fund

Ralphs Grocery Company The E.F. Wallengren Fund for ALS Research Bill Robinson Eugene and Elizabeth H. Rosenberg Rosenberg Research Fund Edward and Dana Slatkin The Neil Brourman, M.D. ALS Research Fund Ellen Watt in loving memory of Gordon Watt Claire Whitaker in memory of my son, E.F. Wallengren Robert L. Wintermyer, Ph.D., PA-C

26

Rene J. Beckham, M.D. and John J. Shufeldt, M.D. in memory of Thomas W. Beckham, Ph.D.

Elinor M. Georgopulo

Mr. and Mrs. Robert Pokelwaldt Edmund G. McCurtain II in memory of Edmund McCurtain

The ALS Association Minnesota/North Dakota/ South Dakota Chapter in honor of Sue Spalding

Mady Brown in memory of Rose B. Cohen Dr. Spencer L. Brown and Dr. Lauren C. Pinter Brown The Neil Brourman, M.D. ALS Research Fund Dr. and Mrs. J. Bruijn Fred and Elizabeth Burcaw in memory of Iva Burcaw and Ralph Frederick Charles M. and Monica A. Burkett* in memory of Charles E. Burkett Marjorie V. Butcher in honor of Marie-Claude Minard and in memory of Christian H. Minard Mark Calmes in honor of Jane Calmes The Gary and Jan Campbell Family Foundation Kevin and Kathleen Crittenden


THE LAWRENCE R. BARNETT RESEARCH COUNCIL

John C. Carmody

Donald R. Hammonds

Sharon F. Chapman The George Chapman ALS Research Fund, in memory of George

Joyce C. Harris

Cochran Family Foundation

CONT.

Stephen P. Hass in memory of Harriet S. Hass Robert V. Hemm, Jr., and Linda D. Hemm

Gary Marks The Neil Brourman, M.D. ALS Research Fund

Betty Scharf in memory of William Scharf

Clark H. McGehee in honor of Robert W. McGehee

Mark A. Siem and Joan S. Siem in memory of Shirley Staton

Albert Nocciolino in memory of Emma Nocciolino

Harry and Sandra Strain in memory of Art Doyle

Anamarie Neumiller

Judy Stuart in memory of my husband, Alan A. Stuart

Fred Coffield Fund for ALS Peter and Jo Cornell The Neil Brourman, M.D. ALS Research Fund

Maynard G. Hine in honor and remembrance of my dear wife, Bonnie June Hine

Carleton R. Cummings, Jr. in memory of Barbara “Bobbie” Cummings

Hollywood Charity Horse Show The E.F. Wallengren Fund for ALS Research

Donald Cutler

Samuel and Hannah Holzman Trust

Alvin and Linda Dietz Fund Cynthia H. Drollinger

Edward and Marcia Horowitz in memory of Aaron Horowitz and Marjorie Horowitz Oman

William and Robin Eiland in memory of Billie P. Eiland

Jay and Delia Jennings in memory of Rob Marks

Carolyn Ford Pennington Benevolent Fund

Laura Davis Jones Harry F. Davis ALS Fund

Michal Freedman* Mr. and Mrs. Robert A. Gay Dr. Martin G. Giesbrecht in loving memory of Patricia Berlin Mary Cornelia Ginn Drew and Myra Goodman Peter J. Hackett

Janet C. Kireker Howard B. and Susan L. Levy* in memory of Jack and Phyllis Levy David H. Lowe, M.D. in memory of Susan Lowe Marcia A. Luisi, M.D. in memory of Michael F. Luisi

Thomas K. Ng in memory of Shan Ng

Brenda Vathauer Slade

Allen J. and Lorraine Noveck in memory of Margaret Noveck

Helen F. Weber* in memory of William C. Weber, Jr.

Randy and Karen O’Hare in memory of Doris L. (Dee) O’Hare and Diane P. (Dee) Stone

Michael and Nicole Weis in memory of Bernell Weis

Bernard Paiewonsky and Family* in memory of Sabina Paiewonsky Phi Delta Theta-Idaho Alpha Chapter in memory of our brother, Lou Gehrig Anita M. Pollak in memory of Mervin Channing Pollak Robin L. Quigley, Captain U.S. Navy (Retired) in honor and in memory of Joe Martin

Anne H. Winks in memory of Megan Gifford-Foulis Woodward Family Foundation Ken and Marie Youngblood in memory of George J. Pitre Mary Jane Yue The Neil Brourman, M.D. ALS Research Fund, in honor of Josie and Richard Lee, in memory of their son, Tommy D.M. Lee

Dr. and Mrs. S. Michael Roe in memory of Jack Michael Roe, M.D. Murray Rothstein in memory of Jacqueline S. Rothstein

Dr. York T. Mandra 27


PHILANTHROPY This report lists the names of individuals, corporations and foundations that made contributions to The ALS Association between February 1, 2012 and January 31, 2013. Every effort has been made to ensure the accuracy of this listing. If your name has been inadvertently omitted or listed inaccurately, please accept our apologies and contact our office at 888-949-2577.

Thank you to all of our donors who supported The ALS Association with a contribution of $1,000 or more, which are listed below:

CORPORATIONS, FOUNDATIONS AND ORGANIZATIONS

Bristol-Myers Squibb Company

ExxonMobil Foundation

LA-CO Industries, Inc.

BTIG, LLC

Fidelity Charitable Gift Fund

LC Technologies, Inc./Eyegaze Systems

Anonymous

California Community Foundation

Finger Lakes Skeet League

LD Commodities Portland LLC

Advantage Testing, Inc.

The Capital Group Companies, Inc.

Flame Enterprises, Inc.

Lee Brothers Inc.

Alliant Energy Foundation

Cars 4 Causes

H. Fort Flowers Foundation, Inc.

Lee Mendelson Productions, Inc.

Alpha Delta Pi Foundation, Inc.

Charity Gift Certificates

GE Foundation

LegacyTree Foundation

Alpha Delta Pi Iota Chapter

Check Point Software Technologies, Inc.

Gilbert Unified School District No. 41

Alpha Gamma Rho

CNA Foundation

Global Impact

Annette M. and Theodore N. Lerner Family Foundation

ALS Society of Canada

Coles River Club

Google

America’s Charities

Comcast / One Comcast Center

AquaSid, LLC

Community Foundation of Central Illinois

Archer Daniels Midland Co.

Community Foundation for The National Capital Region

The Barbara Vanderbilt Peck / Justin Friedman Fund for Neurological Research of the Greater Cincinnati Foundation

The Association for Frontotemporal Degeneration ATG Rehab

The David and Alan Greene Family Foundation

Community Foundation of New Jersey

Avanir Pharmaceuticals

Community Foundation serving Richmond and Central Virginia

AYCO Charitable Foundation

Cordell Practice Management Group, LLC

IBM Corporation

Aylward Family Foundation

Corymore Foundation

IBM Employee Services Center

Bank of America Foundation

Cytokinetics, Inc.

ICAP Energy LLC

Bayada Home Health Care

The Alvin & Fern Davis Foundation

Iglewski Family Foundation

Edward and June Bernstein Foundation

Robert E. Dods Family Foundation

ING

Beth Shalom of Carroll County

The Dodson Foundation

Inner Space Constructors

Biogen Idec

Donna’s Dance....A Studio

Isis Pharmaceuticals, Inc.

Biotechnology Industry Organization

Dynavox Systems, LLC

The J2 Foundation

Bluco Corporation

Electric City Running Club

The Nathan P. Jacobs Foundation

BNY Mellon Community Partnership

Electromed, Inc.

Johnson & Johnson

Boeing Company Political Action Committee (BPAC)

Employee’s Community Fund of The Boeing Company

Booz Allen Hamilton

Employees of Northrop Grumman Political Action Committee Energy & Resource Solutions

28

The Hainer Foundation The Hurlbut-Johnson Fund

JustGive.org Kaufman, Hall & Associates, Inc. Knopp Biosciences LLC The Jack and Dorothy Kupferberg Family Foundation

Lifetouch Inc. Lozier Foundation Macquarie Bank Foundation Limited Martin Health System The McIntosh Foundation Merck Partnership for Giving Michael Baker Corporate Foundation Microsoft MUSC Pharmacy School Class of 2012 National Philanthropic Trust NCI Information Systems, Inc. The Neeb Family Foundation Neshaminy High School Drama Club Network For Good Occidental Petroleum Corporation Olson/Kotowski, Inc. The Oppenheim Family Fund The Pattis Family Foundation Pepsico Foundation Pfizer Foundation Pfizer Inc. Pharmaceutical Research and Manufacturing Association


PHILANTHROPY CONT. Phi Delta Theta––Illinois Gamma Chapter

Stuart Steel Protection Corp.

Leah Alfonso

Michael Buratti

Phi Delta Theta––Kansas Zeta Chapter

Everett D. & Geneva V. Sugarbaker Foundation

Dawn M. Algrim

William and Janene Burke

Rene Alkoff

Samuel Burton

Chad and Sami Amosson

Steve Byrd

Dorothee P. Angel

Matthew T. Caddell

Andrew J. Ashton

Michele Capps

Barbara R. Ball

Emanuel and Joan Carreras

Jennifer Ballance

Charles and Michele Carroll

Ottis Ballenger

Margaret A. Carver

Lester Baltimore

Richard Chadakoff

Lawrence R.† and Isabel† Barnett

Ann M. Chioles

Lawrence R. Barnett

Harris Chung

H. R. and Doreen Barr

Joseph Cipriano

Deborah Bass

Donald K. Clark

Michael Batnick

Scott Cohen

Sharon D. Bell

Stephen and Nancy Cohen

Nancy Berkovitz

Paul Colasanti

Josh M. Berman

James and Margaret Coleman

Jay and Pamela Bieber

John and Janet Collins

Michael Bisceglia

Terrie D. Combs

Cristina Bita

Chris and Janice Commons

Robert J. Bjorseth

Gary J. Connell

Gene and Danell Bleymaier

Will Conniff

C. James and Carole Bluhm

Cathy Z. Cordisco-Emanuelson

Brett Boege

Richard and Bunny Corey

Brion Brandes

Joseph and Sandra Corish

David G. Brandt

J.R. and Mitzie Craddock

Robert Brooks

Nancy Crockett

Tracy L. Brooks-Szegda

Neil and Mary Joe Crosby

INDIVIDUALS

Heather A. Brown and Matt Brown

Lisa Cuff

† Deceased

Karen S. Brown

John and Deirdre Dabney

Robert H. Brown, Jr. and Elaine Beilin

Elizabeth Daitch

Chris W. Brussalis

Stephen and Lisa D’Amato

Phi Delta Theta––Maryland Alpha Chapter Phi Delta Theta––Maryland Gamma Chapter Phi Delta Theta––Mississippi Beta Chapter Phi Delta Theta––Missouri Alpha Chapter Phi Delta Theta––Ohio Beta Chapter Phi Delta Theta––Ohio Mu Chapter Phi Delta Theta––Oklahoma Beta Chapter Phi Delta Theta––Oregon Beta Chapter Phoebe Snow Foundation Planet Green The Platt Foundation, Inc. The Polk County Community Foundation,Inc. PostNet Pride Mobility Products Corp. Quest Diagnostics Renaissance Charitable Foundation, Inc. Richard Stravitz Gallery LLC Roll Giving The Irene Herbert Ross and Harper Grant Ross Foundation

Swiss Re Synapse Biomedical Inc. Louis F. & Mary A. Tagliatela Foundation TechSoup Stock Therm-Omega-Tech Inc. Time Warner Cable TisBest Philanthropy TMI––The Episcopal School of Texas Tobii Assistive Technology, Inc. Tropham Foundation Truist United Jewish Foundation of Metropolitan Detroit United Stationers Charitable Foundation Vanguard Charitable Endowment Program Vera Bradley The Vermont Community Foundation Visa Givingstation Vitas Hospice Services, LLC

SA Services LLC

VMware Foundation

Sanofi Aventis U.S.

The Edgar V. Weir Family Foundation

Geoffrey and Susan Schmidt Foundation

Westampton Education Association

Schwab Charitable Fund

The Harold Wetterberg Foundation

The Thomas H. and Mayme P. Scott Foundation, Inc.

Wittenberg University

Sempra Employee Giving Network

ZBI Employee Allocated Gift Fund

Worcester Academy

Shugart Family Foundation Fred Siegel Foundation Silicon Valley Community Foundation The Southern League of Professional Baseball Clubs, Inc.

Anonymous (2)

Stand Aid of Iowa, Inc.

Carolyn F. Adelsten

Thomas W. Abendroth and Terri L. Mascherin

Mrs. J. Mahlon Buck, Jr. 29


PHILANTHROPY

CONT.

Michael and Patricia D’Arcangelo

Robert First

Betty Hoffman

Paul Lang

William F. Darling

Bernadine Flickinger

Matthew and Cindy Hogge

Norma L. Laubhan

Susan Darrington and Bill Darrington

Mark M. Foster and Nancy K. Koehler

Wayne Hoovestol

Douglas Lavallee

The Honorable Jay Daugherty and Mrs. Lyn E. Daugherty

Michael R. Foster

Doris Horner

Virginia Leitch

Richard and Lynn Frankel

Kevin and Patricia Houlihan

Gary A. Leo

Mark and Aileen Friedlein

Michael J. Howes

Richard E. Leonardon

Betty J. Fritz

Eric W. Hoyt

Jeffrey and Joyce Levine

Cynthia Garretson

Joe B. Hudgens

Ben Lewis

Jack Gendzel

Kenji Iijima

Steve J. Lindo

E. Norman and Suzanne George

Mark and Jane Ivanick

Gary and Judy Lohmeyer

Michael and Alecia Gersh

Brendan Jacksits

Cristina Lombardo

Jane H. Gilbert

James A. Jahna, Jr.

Joanne Lotreck

Tim Glocker

Jeff Jones

Joan B. Loving

Larry C. Glotfelty and Tracy L. Glotfelty

Linda Joost

Larry L. Luing

Roberta Goin

Judy A. Jorge

Earl and Aya Goldberg

Andrew and Elizabeth Jurgenson

Theodore D. Lynch/The Lynch Charitable Fund

Martin and Sandra Goldstein

Bill Jurney

Mary Lyon

Stan Goldstein

Susan Kaiser

Leslie MacNeil

R.C. and Connie Gonzalez

George Karnoutsos

Gloria Salerno Maehl and Gary Maehl

Russell and Kathy Gottfried

Roy Kaufmann

Kimberly Maginnis

Anthony Grande

Dan and Nancy Kennedy

Heidi Magner

Mr. and Mrs. William T. Hammond

Dan and Margie Kernen

Eric Maier

George and Kathleen Hardart

Richard and Gloria Kerns

Richard Maizel

Edwin and Linda Hartz

Mary A. Kim

Wendy Manning

Mr. and Mrs. Pierre D. Hayward

Franklin and Collette Kitto

Kate Mansergh

Edith S. Heckmanâ€

Sapna Kochuparambil

Todd and Felice Marcy

Robert J. Hemmig

Edgar and Eileen Koerner

Maura Marczewski

Mr. and Mrs. Donald Herman, from the John & Rose Herman Support Foundation

Matthew B. Koll

Thomas L. Martin

Allison Evans

Viola Kranenberg

Mrs. Russell (Marjorie J.) McChesney

Frank L. Faist and Family

Donald and Bluma Herman

Bryce Kranzthor and Nancy Griffin

Richard and Francesca McCleary

Laura Felzer

Susan E. Hermann

Joanne Kranzthor

Janet M. McClelland

Laura Finical

Joyce A. Hill

John Kugler

Christopher and Jeanne McCoy

Lawrence and Margaret Hinders

Joseph and Nancy Kunkel

Daniel McDermott

Sherman and Pamela Hixson

Charles Lamont

Linda D. McFarland

Nancy G. Daunton Elizabeth L. Davis Sydney K. Davis Daniel de Grandpre David E. Decosse Larned L. Delano Jesse D. Dickson Rudolph and Teresa Dieguez Julie Diffenbach Teresa Donahue Cynthia Douthat Dana Dratch and Esther E. Bloustein Edward G. Eberl Catherine Eckbreth Mitchell and Lisa Eisen Marianne Elam Morton T. Eldridge Robin M. Elliott and Thomas Craney David Ellis Ernest and Mary Ellison Michael and Phyllis Elpern Laura R. Enzbrenner Kenneth J. Erickson

30


PHILANTHROPY

CONT.

Richard and Beth McLaughry

Tanya Quinn

Esther K. Schwartz

Ann E. Titzer

Marney Mesch

Nasrin F. Rahatzad

Mildred Schwartz

Allan J. Tobin

Greg Miller

Bill and Angela Ramey

Neil F. Schwartz

Joseph and Toshiko Tompkins

Peter Miller

JoAnn Ranck

Robert and Elizabeth Scott

Stephen and Lawson Travers

Nedra R. Mise

Sedell G. Rand

Michael and Renita Seldowitz

William and Jeanne Tyler

Jose Moreno

Dale and Carol Rasmusson

Tracy and Helen Selmon

Rhonda J. Uhlenbrock

John and Margaret Morgan

Chris Rath

Mark Shacket

Blanche Underwood

Allison Muentener

Jim Ream

Lisa Sharp

Elsie M. Upchurch

Louis Mufich

Tony N. Redd

Victor and Liliana Shen

Robert Van Iten

Ruth Murphy

Nancy L. Reinen

Jason R. Shonk and Jennifer Randle

Robert C. Verrett

James and Kandice Murray

Kathy Reynolds

Mark Siebert

Larry and Marianne Waggoner

Sean Murray

Michael and Anne Rhoads

Samantha Siegel

Ira J. Wagner

Thomas E. Myers

Timothy and Barbara Riazzi

Howard and Robyn Silk

William and Peggy Wainscott

John and Michelle Neeb

Shane and Robin Robison

Michael and Abbey Silver

Natalie and Larry Wassong Charitable Fund

Michael Newman

Bobbiedine Rodda

Donnie and Jacquelyn Silverman

Douglass S. Watson

Terence Nicol

Parker O. Roe

William Peter Sipe and Joyce Sipe

John R. Wendel

Albert I. Niemeyer

Nancy D. Rosan

Jerry Skinner and Ann Cody

Frederic Westendorf

Alice Noll

Carol Rosenberg

Lee and Cynthia Small

Paul and Erika White

Stuart and Marcia Obermann

Eugene and Elizabeth H. Rosenberg

Gene Smith

Jeffrey and Jennifer Whitehorn

Philip and Laureen O’Larey

John and Barbara Rothhaar

Kevin and Laurel Smith

Bernd and Frances Wiehn

David and Jamie Oliver

Murray Rothstein

Edgar and Saundra Snyder

Terry and Colleen Wilkins

Gary Olsen

Sharon M. Rowlen and Craig Rowlen

Andrew and Jane Soffel

Sabin Willett and Marta Willett

Daniel J. O’Neill

Richard C. Ruggeri

William Soffel

Timothy Wilson

Timothy O’Toole

Thomas R. Ryan

Michael R. Spell

Linda W. Windsor

Thomas W. Palmer

Paul Ryken

Robert and Sylvia St. Jean

Fredrick M. Wiste

Martha M. Parke/The Parke Charitable Fund

Robert Rynalski

Keith and Vickie Stamler

Susan Wood

Stephen Parr

Nelson Saiers

Rudolph Steiner

Gilbert D. Woolridge

Jeff and Mary Patton

Dan and Sara Sapadin

Diane F. Stephens

Deborah Woodward

Mr. and Mrs. Gordon R. Pellerin

John and Dorothee Sargent

Barry Strugatz

Frances F. Wurlitzer

Joseph Robert Portmann III/The Portmann Family Charitable Fund

Patricia P. Savage

Jan H. Suwinski and Susan Suwinski

David M. Yocum

Michael Saxon

Rebecca C. Swan

David Zaunbrecher

Thomas P. Scanlan

Lara Swenson

Dean A. Zerbe

Gwyneth M. Schultz

Joseph and Ellen Tessitore

Mark B. Schupack

Quinn Thompson

Howard S. Potter, Jr. Gregg S. Powell Rose Marie Proietti

31


LEADERSHIP

TRUSTEES Lawrence R. Barnett The ALS Association Chairman Emeritus The Hon. Jay Daugherty * The ALS Association Chairman Shaffer Lombardo Shurin Kansas City, Missouri William Thoet* The ALS Association Vice-Chairman Senior Vice President Booz Allen Hamilton Herndon, Virginia Luis Leon* The ALS Association Treasurer Retired Chief Executive Officer Royal Caribbean Cruises, Ltd. Miami, Florida

Chris Brussalis President and CEO The Hill Group, Inc. Carnegie, Pennsylvania Daniel deGrandpre Chief Executive Officer dealnews.com Madison, Alabama Cynthia D. Douthat* Atlanta, Georgia Robin R. Ganzert, Ph.D. President American Humane Association Washington, D.C. Wilson N. Krahnke* Chevy Chase, Maryland

Douglas Butcher* The ALS Association Secretary CBRE/Louisville Louisville, Kentucky

Edmund G. McCurtain, II* Boulder Creek, California

Lawrence R. Barnett, Esq.* Gipson, Hoffman & Pancione Los Angeles, California

Kim Ann Mink, Ph.D. Global General Manager, Elastomers Dow Chemical Company Midland, Michigan

Phyllis R. Brourman, Esq. Beverly Hills, California

32

* Executive Committee Members

Timothy O’Toole Chief Executive Officer Vitas Healthcare Corporation Miami, Florida

Ellyn C. Phillips* Chair The ALS Association Greater Philadelphia Chapter Ambler, Pennsylvania Jonathan Roberts Executive Vice President and Chief Operating Officer CVS Caremark Lincoln, Rhode Island Elizabeth Heller Rosenberg* Director Haworth Library New York, New York William D. Soffel* President Vacation Properties Realty, Inc. Chautauqua, New York Chris Stevens Vice President Corporate Relations and Customer Development Keurig, Inc. Wellesley, Massachusetts Allan Tobin, Ph.D. CHDI Foundation Los Angeles, California


LEADERSHIP CONT.

CHAIRMAN’S COUNCIL Robert V. Abendroth, Esq. Whyte Hirschboeck Dudek S.C. Milwaukee, Wisconsin Robert J. Bjorseth Tech Inc. Lenexa, Kansas Andrew T. Brophy Brophy Properties, Inc. Washington, D.C. Richard P. Essey Chairman TemPositions San Francisco, California Allen L. Finkelstein, Esq. Pavia & Harcourt New York, New York

Lawrence A. Rand Senior Vice President Kekst and Company New York, New York Howard B. Safenowitz, Esq. Calabasas, California Stephen H. Saltzman North Bergen, New Jersey Kenneth Wiegand, Jr. Retired Senior Vice President Booz Allen Hamilton Herndon, Virginia Laural Winston Retired Chief Financial Officer TECHMER PM Palm Desert, California

Alan R. Griffith Centreville, Maryland William G. Matthews Retired Vice President Sales 3M St. Paul, Minnesota Benjamin S. Ohrenstein, Esq., CPA Haverford, Pennsylvania

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LEADERSHIP CONT.

NATIONAL OFFICE EXECUTIVE STAFF Jane H. Gilbert President and Chief Executive Officer Dan Reznikov Chief Financial Officer Stevan Gibson Chief Public Policy Officer Michelle Keegan Chief Development Officer Kimberly Maginnis Chief Care Services Officer Carrie Martin-Munk Chief Communications and Marketing Officer Ken Nicholls / Lance Slaughter Chief Chapter Relations Officers Lucie Bruijn, Ph.D. Chief Scientist

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THE ALS ASSOCIATION alsa.org 1275 K Street NW Suite 250 Washington DC 20005 Phone 202 407 8580

Annual report fye2013  

The ALS Association Annual Report for Fiscal Year Ending January 31, 2013

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