Investing in A Future WITHOUT ALS
Annual Report 2011
annual report 2011 / 0
Vision Create a world without ALS
MISSION 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.
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Chances are great that during the time you spend reading this annual report, at least one person will be diagnosed with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s Disease. That person will join the approximately 30,000 Americans living with ALS–a progressive, degenerative neuromuscular disorder that steadily robs individuals of their ability to initiate and control muscle movement, and eventually their ability to speak. There is no cure for ALS. The life expectancy for a person who receives the diagnosis is two to five years.
ALS can strike anyone at any time: Male and female. Young and old. Key contributors to workplaces and communities. Cherished family members and friends. Indeed, beyond the people living with the disease, ALS is a heart-wrenching experience for the spouses, children, parents, and other loved ones who can only offer their love and support as an illness that befell even baseball’s “Iron Horse” strengthens its hold. For more than a quarter-century, one organization has stood with people living with ALS and their families, whether it’s delivering education and resources to enhance the quality of their lives; providing state-of-the-art, multidisciplinary care through ALS Association Certified Centers of Excellence; promoting public awareness about the needs of the ALS community; working with national and state legislators to advocate for policies and funding that will improve the lives of people with ALS and bolster efforts to find better treatments and a cure; or serving as a catalyst for the research that will ultimately lead to a world without the disease. As the only national nonprofit organization fighting Lou Gehrig’s Disease on every front, The ALS Association is investing in a better future––a future without ALS. In FYE 2011, we made significant strides toward fulfilling that vision.
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Spearheading a Comprehensive, Coordinated Research Effort Securing a future with more effective treatments–and, ultimately, a cure–for Lou Gehrig’s Disease requires an investment in research that unravels the complex factors placing individuals at risk for ALS, along with the genetic and cellular-level changes that occur once the disease process is set in motion. It requires proactive measures to draw the brightest young scientific minds into the field and a coordinated research strategy that leaves no stone unturned, pursuing all plausible hypotheses about the disease’s pathogenesis. Given the urgency of finding better treatments for people who currently have the disease, it also requires an accelerated process for translating important laboratory
discoveries into new treatment strategies, including a “fast-track” approach that moves promising drugs into clinical trials. The ALS Association takes a systematic and comprehensive approach to this investment, and it is paying dividends. In our 26th year, we continued to serve as a catalyst for laboratory research that is leading scientists to a better understanding of Lou Gehrig’s Disease, as well as efforts to translate that knowledge into more effective treatments and a cure. Through a variety of funding mechanisms and meetings that bring together leading ALS scientists to exchange knowledge and ideas, The Association
guides an international research effort that attracts and supports established investigators and talented new scientists to the mission. By fueling innovation, targeting promising areas, and funding scientists with wide-ranging expertise in their efforts to both exploit new and emerging technologies and build on each other’s findings, we are hastening the day when ALS will be relegated to the history books. In FYE 2011, The Association renewed its focus on drawing the most promising young researchers into the field through postdoctoral fellowships that enable top Ph.D. graduates to start their scientific careers in an established ALS laboratory. Three new annual report 2011 / 3
Spearheading a Comprehensive, Coordinated Research Effort Milton Safenowitz Postdoctoral Fellowships were awarded to talented young investigators as The Association continues to build the next generation of scientists working to bring an end to the disease. In addition, The Association funded new Association-initiated awards and new investigatorinitiated awards, as well as commitments for ongoing research projects. Funding also continued for The ALS Association TREAT ALS/NEALS Clinical Trials Network, a partnership with government agencies and drug and biotech companies that has dramatically accelerated the pace at which promising ALS drugs are clinically tested by combining efficient drug-discovery approaches with priorities set for existing drug candidates. Many of these investments are already beginning to come to fruition. For example, in a large ALS Association-funded genome-wide association (GWA) study conducted in Finland, researchers found that a major cause of familial, or inherited, ALS is located on chromosome 9p21. Finland is a wellsuited location for a GWA study of ALS because the incidence of the disease is among the highest in the world and the genetic background of the Finnish population is relatively homogeneous. Elsewhere, a multinational research team funded in part by The Association identified mutations in the VCP1 gene as a cause of familial ALS. FYE 2011 was also notable for the launching of a Phase I study of ISISSOD1Rx in patients with an inherited, aggressive form of Lou Gehrig’s disease. The clinical trial, initiated by Isis Pharmaceuticals with funding from The ALS Association, is the first to test an antisense drug in a neurological disorder. Antisense techniques are used
to deactivate disease-causing or undesirable genes in an effort to prevent them from producing harmful or unwanted proteins. The Association sponsored, organized and participated in several significant workshops during FYE 2011. The California ALS Research Network held the first California ALS Research Summit, a two-day meeting that included more than 50 of the state’s leaders in ALS research, as well as representatives from The ALS Association, the National Institute of Neurological Disorders and Stroke (NINDS), and the California Institute for Regenerative Medicine. The purpose was threefold: to share information in three major areas of ALS research, spur discussion about ALS research funding, and foster networking among scientists, clinicians, representatives of biotech companies, and ALS advocates. The ALS Association and NINDS also sponsored Advances in Disease Modeling for ALS and FTD, a workshop focusing on strategies used to generate ALS and fronto-temporal lobar degeneration disease models and lessons learned from studying these model systems.
cont.
ALS Association chapters held several symposia to educate patients and families about The Association’s research program and advances in the field. And finally, The ALS Association organized a Drug Working Group Meeting in conjunction with the American Academy of Neurology’s annual meeting in Toronto. The 2010 Sheila Essey Award for ALS Research, presented by The ALS Association and the American Academy of Neurology, went to Dr. Clive Svendsen, a global leader in stem cell research who has been instrumental in bringing stem cell approaches to the clinic. After initially focusing largely on Parkinson’s disease, Dr. Svendsen, director of the Cedars-Sinai Regenerative Medicine Institute in California, has used funding from The Association to establish stem cell approaches for the treatment of ALS. The Sheila Essey Award for ALS Research, established in 1996, provides $25,000 to the recipient to continue his or her ALS research.
The Association was a key organizer and supporter of two important meetings on the exciting issue of stem cell research and its implications for ALS–Stem Cells, Genetics and RNA Binding Proteins: Recent Advances in ALS Research and Drug Discovery; and the International Consortium of Stem Cell Network (ICSCN) Workshop Towards Clinical Trials Using Stem Cells for Amyotrophic Lateral Sclerosis (ALS)/Motor Neuron Disease (MND). In another partnership with NINDS, The Association supported an ALS inducedpluripotent stem cell consortium.
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Fighting for the Needs of the ALS Community Investing in a future without ALS–and a better world for the individuals and family members currently afflicted–also requires awareness and advocacy. It means educating the public about Lou Gehrig’s Disease and enlisting their support, as well as that of legislators, to fund an all-out research effort while establishing policies and providing resources that meet the needs of the ALS community. The ALS Association works closely with national, state, and local policy-makers to promote the interests of the ALS community, and in FYE 2011 the payoff from that investment could be seen in many exciting developments.
The Centers for Disease Control and Prevention’s Agency for Toxic Substances and Disease Registry (ATSDR) fully implemented the National ALS Registry, which has the potential to become the single largest ALS research project ever created. The Registry will collect critical information about the disease, helping to improve care for people with ALS while assisting researchers in learning what causes the disease and how it can be treated…or even prevented. With complete implementation, every person with ALS in the United States can self-enroll in the Registry and, for the first time, ALS cases from the entire country will be identified. Thanks in part to The Association’s efforts, support for the Registry is mounting. Led
by Reps. Eliot Engel (D-NY) and Peter King (R-NY), nearly 40 members of the House of Representatives, up from 25 in FYE 2010, signed a letter urging the House Appropriations Committee to increase funding for the National ALS Registry to $10 million. FYE 2011 was also marked by a $7.5 million U.S. Department of Defense award for ALS research via the department’s ALS Research Program (ALSRP) –representing a 50 percent increase in funding over FYE 2010. The Association worked with 25 U.S. senators in urging the Senate Appropriations Committee to increase support for the program in 2011. The House Defense Appropriations annual report 2011 / 5
Fighting for the Needs of the ALS Community cont. Subcommittee voted to increase funding for the ALSRP to $10 million. The Association and its chapters worked with several states to secure funding to support ALS research and patient care. Among these was Illinois, which awarded $900,000 in FYE 2011 and has now awarded $6.9 million to The Association since 2004. Other states that awarded funding included Pennsylvania ($325,000), North Carolina ($400,000), Louisiana ($125,000) and Alabama ($100,000). In addition, California provided $297,000 for ALS research, funded via contributions made on state income tax forms. The ALS Association supported specific elements of, and educated the ALS community about, the Affordable Care Act, health reform legislation signed into law during FYE 2011. Provisions of the law supported by The Association include expanding access to long-term care services; eliminating preexisting condition exclusions; banning lifetime
and annual caps on health insurance; closing the Medicare prescription drug benefit coverage gap (the so-called doughnut hole); and advancing the search for a treatment and cure for ALS through the establishment within the Cures Acceleration Network at the National Institutes of Health, which supports translational research, as well as provisions that promote the development of biologics for ALS. The Department of Veterans Affairs proposed new regulations, strongly supported by The Association, which would automatically provide a 100% disability rating to all veterans with ALS. Currently, veterans qualify for a minimum rating of 30%; if implemented, the minimum monthly disability compensation for veterans with ALS would increase from $376 to $2,673. However, this is just the minimum level of compensation. The proposed rule also includes language that would help
veterans qualify for as much as $8,000 a month in compensation, or close to $100,000 per year. Finally, The Association once again hosted the National ALS Advocacy Day and Public Policy Conference in Washington, D.C. Chapters and advocates from across the country attended the three-day event, promoting The Association’s public policy priorities in meetings with more than 400 members of Congress. At the conference, The Association awarded the Henry A. Wallace Award to Sen. Bob Casey (D-PA) for his work to support the ALSRP at the Department of Defense. Sen. Lisa Murkowski (R-AK), the 2009 recipient of the Jacob Javits Award, also participated in the conference and paid tribute to her cousin Jenny Dwyer from the state of Washington, who received the Rasmussen Advocate of the Year award. Other conference participants included Kate Linder, star of the daytime television drama “The Young and the Restless;” Dr. Story Landis, director of the National Institute of Neurological Disorders and Stroke; and Dr. Kevin Horton, director of the National ALS Registry.
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SPREADING THE WORD ON LOU GEHRIG’S DISEASE Long seen as the leading voice and most trusted source of information about Lou Gehrig’s Disease, The ALS Association continued to use public outreach, media relations, and the Internet in FYE 2011 to raise awareness about ALS and the search for a cure. The Association’s signature event, the Walk To Defeat ALS®, draws more than 150,000 participants and volunteers to approximately 170 events across the nation each year. In FYE 2011, the Walk to Defeat ALS experienced a 14.6% increase and ranked No. 20 on the Run Walk Ride Thirty, an annual report ranking the top 30 athletic fundraising programs based on revenue. The Walk to Defeat
ALS has now raised $117 million since its inception in 2000, making it the largest ALS Association fundraising event. The Association also continued its long and fruitful relationship with Major League Baseball (MLB) and Minor League Baseball (MiLB). FYE 2010 marked the second year of the 4♦ALS Initiative®, an effort to raise awareness and support for the fight against ALS, which involved all ALS Association chapters. Through the 4♦ALS AWARENESS/Covering All the Bases Hitting Challenge, participants made pledges to The ALS Association based on the number of hits garnered by their favorite MLB or MiLB team at a regular-season game-day event dedicated to
raising ALS awareness. With participation from all MLB teams as well as many MiLB teams, the 4♦ALS Initiative generated unprecedented publicity for the cause. The Association’s website, alsa.org, was introduced with a new look, updated functionality, and improved organization to help users find the information they’re looking for more easily. The website, a vital source of information for those battling ALS, as well as for people looking for the latest news and information about the disease, topped more than one million unique visitors during the year. annual report 2011 / 7
SPREADING THE WORD ON LOU GEHRIG’S DISEASE cont. While The Association has had a presence on social media sites for many years, these valuable and increasingly popular communication tools became much more widespread among people with ALS, families, and caregivers in FYE 2011. The Association increased its activity on sites such as Facebook, Twitter, and YouTube, and constituents embraced the opportunities to share experiences with each other and receive frequent updates about The Association and ALS community activities. For ALS Awareness Month in May, The Association conducted a virtual media tour in which legendary actress Angela Lansbury joined ALS Association president and CEO Jane H. Gilbert. During a twoto-three-hour period spent in a television studio, the pair built ALS awareness and discussed the mission/ vision of The ALS Association through interviews conducted remotely with more than a dozen local major-market TV programs.
was highlighted by the Jeff Probst CBS program “Live for the Moment” on Roger Childs, a Colorado man with ALS, and his family; and ABC’s “Extreme Makeover: Home Edition,” which featured the story of Jeremy Williams, a beloved high school football coach who led his team to a winning season despite the hardships that come with living with Lou Gehrig’s Disease. The immense popularity of NASCAR also afforded The Association an opportunity to promote public awareness. A car design contest using The ALS Association logo was held and Willie Allen, a NASCAR driver whose father died of Lou Gehrig’s Disease, carried the logo of The Association on the hood of his #05 Chevrolet during the NASCAR Nationwide Series race at Dover International Speedway.
The Association supported and promoted TV programs that focused attention on ALS. FYE 2011
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Hands-on Support for People with ALS and Their Families The Association also provides vital support, education and patient care to make life better for people living with ALS and their families through a coordinated nationwide network of professionally staffed chapters, certified centers of excellence and clinics. From the community outreach provided by the chapters to the care and management delivered by ALS experts at the centers and clinics, the more than 100 ALS Association affiliates across the nation ensure that people with ALS and their families are never alone.
ALS and their families while raising crucial funding for ALS research. The Association ensures a strong network of chapters by providing training and mentoring, as well as opportunities for collaboration and networking. Services include board and staff development training and consultation; strategic planning guidance; development planning and consultation; operational planning and consultation; an online social networking site for chapter leadership; an annual leadership summit; and benchmark data and standards.
One of The ALS Association’s great strengths is its nationwide network of chapter members. Forty-one chapters across the country serve persons living with
In FYE 2011 there were several important developments involving chapters. The Minnesota/ North Dakota Chapter expanded its territory to
include the entire state of South Dakota; the chapter is now known as The ALS Association–MN/ND/SD Chapter. The Northwest Arkansas Partner affiliate became the Arkansas Chapter in Organization, serving the entire state. The Greater Los Angeles and Bay Area chapters in California merged to form the new ALS Association–Golden West Chapter, serving more than 70 percent of the state’s population. And finally, the Rocky Mountain Chapter expanded to serve the state of Wyoming. While The ALS Association is investing in a future world without ALS, we never lose sight of those who are struggling with the disease today. Until the future we are working so hard to achieve is annual report 2011 / 9
Hands-on Support for People with ALS and Their Families cont. realized, we will continue to remain equally focused on improving the quality of life of people living with ALS and the families involved in their care. The Association helps patients and families cope with the daily challenges of living with Lou Gehrig’s Disease by providing information, resources, and referrals to many sources, including a wide variety of community services. Through its efforts in patient care, The ALS Association continued to serve as an invaluable resource to the ALS community in FYE 2011. For example, The Association produced the video “You Are Not Alone,” a companion to the brochure “We Are with You Every Step of the Journey.” The video provides practical information to people and families ––what newly diagnosed individuals can expect and how The Association will be there to help them through the process and provide advice on how to meet the challenges ALS brings. For chapters, the
manuals “Understanding ALS,” “Living with ALS,” and “Getting Support” continued to be available. In addition, with grant funding from Sanofi-Aventis, The Association was able to begin translating video and print materials into Spanish. In addition, The Association sponsored a webinar to help raise awareness about the new practice parameters for ALS healthcare professionals released by the American Academy of Neurology. With the Motor Neuron Disease (MND) Association, The ALS Association hosted the ALS/MND International Alliance and Symposium in Orlando, Fla., in December 2010. The conference brings together top ALS/MND researchers, clinicians, and allied professionals from around the globe to share findings and exchange knowledge that can advance research and patient care.
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WHETHER WE ARE HELPING to improve the quality of care and support for people living with ALS and their families, educating the public about the disease, advocating on behalf of those living with ALS, or promoting research that can lead to better treatments and a cure, all of us at The ALS Association share a vision of a future in which ALS can be beaten with effective treatments–or, better yet, prevented from ever occurring. As we empower people with Lou Gehrig’s Disease and their families to live fuller lives by providing them with compassionate care and support, we are making the investments that are bringing us closer to our ultimate goal: a world without ALS. annual report 2011 / 11
CONTENTS
Independent Auditors’ Report........................................................................................................... 13 Statement of Financial Position........................................................................................................ 14 Statement of Activities. ......................................................................................................................... 15 Statement of Functional Expenses.................................................................................................. 16 Statement of Cash Flows...................................................................................................................... 17 Consolidated Financial Summary, National Office and Chapters. ................................ 17 Notes to the Financial Statements............................................................................................18-23
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INDEPENDENT AUDITORS’ REPORT The Board of Trustees The Amyotrophic Lateral Sclerosis Association We have audited the accompanying statement of financial position of The Amyotrophic Lateral Sclerosis Association (The “Association”) as of January 31, 2011, and the related statements of activities, functional expenses, and cash flows for the year then ended. These financial statements are the responsibility of The Association’s management. Our responsibility is to express an opinion on these financial statements based on our audit. The prior year summarized comparative information has been derived from the Association’s 2010 financial statements and, in our report dated July 8, 2010, we expressed an unqualified opinion on those financial statements. We conducted our audit in accordance with auditing standards generally accepted in the United States of America. 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 includes consideration of internal control over financial reporting as a basis for designing audit procedures that are appropriate in the circumstances, but not for the purpose of expressing an opinion on the effectiveness of The Association’s internal control over financial reporting. Accordingly, we express no such opinion. An audit also includes examining, on a test basis, evidence supporting the amounts and disclosures in the financial statements, assessing the accounting principles used and significant estimates made by management, as well as evaluating the overall financial statement presentation. We believe that our audit provides a reasonable basis for our 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, 2011, 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.
Long Beach, California June 3, 2011
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STATEMENT OF FINANCIAL POSITION January 31, 2011, with Comparative Totals for 2010
ASSETS
JANUARY 31,
2011
2010
ASSETS
Cash and cash equivalents Investments in marketable securities Receivables: Bequests Chapters, net Pledges, net Other Prepaid expenses Beneficial interest in perpetual trusts Contributions receivable from charitable remainder trusts Property and equipment, net Other assets TOTAL ASSETS
$ 9,340,476 2,330,676
$
6,143,722 2,069,848
1,321,755 2,814,453 498,545 24,163 158,646 627,669
798,145 4,137,374 584,438 39,970 139,891 592,540
303,793 279,028 43,191 $ 17,742,395
198,373 491,563 38,331 $ 15,234,195
LIABILITIES AND NET ASSETS LIABILITIES
Grants payable $ 1,345,885 $ Accounts payable and accrued expenses 1,747,643 Annuity payment liability 611,931 Deferred rent 148,903 Total liabilities $ 3,854,362 $
3,386,733 1,621,519 626,808 80,925 5,715,985
COMMITMENTS (Note 5) NET ASSETS
Unrestricted 6,719,179 4,240,391 Temporarily restricted 6,301,552 4,445,646 Permanently restricted 867,302 832,173 Total net assets 13,888,033 9,518,210 TOTAL LIABILITIES AND NET ASSETS $ 17,742,395 $ 15,234,195 See Independent Auditors’ Report. The accompanying notes are an integral part of these financial statements.
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STATEMENT OF ACTIVITIES For the Year Ended January 31, 2011, with Comparative Totals for 2010 UNRESTRICTED
TEMPORARILY PERMANENTLY RESTRICTED RESTRICTED
TOTAL 2011
2010
SUPPORT AND REVENUE
Contributions $ 4,711,302 $ 1,954,410 $ 6,665,712 $ 4,553,281 Bequests 3,509,744 365,492 3,875,236 3,014,662 Chapters 4,040,860 2,237,185 6,278,045 6,435,107 634,551 634,551 586,744 Events Federated campaigns 202,134 202,134 195,831 Interest income 13,732 41,888 55,620 77,526 Realized/unrealized gain on marketable securities 167,096 91,884 258,980 472,259 71,324 71,324 76,976 Other income Gain on beneficial interest in $ 35,129 35,129 16,456 perpetual trusts Change in value of 35,501 35,501 92,985 split-interest agreements 13,350,743 4,726,360 35,129 18,112,232 15,521,827 Net assets released from 2,870,454 (2,870,454) restrictions Total support and revenue
16,221,197
1,855,906
35,129 18,112,232
15,521,827
EXPENSES
Research grants Patient and community services Public and professional education Fundraising Administration
2,980,858 2,980,858 4,471,709
2,295,049 2,295,049 1,982,730 3,290,501 3,290,501 2,209,779 1,814,542 1,814,542 1,473,913
Total expenses
13,742,409 13,742,409 13,904,668
3,361,459 3,361,459 3,766,537
CHANGE IN NET ASSETS
2,478,788
1,855,906
35,129 4,369,823 1,617,159
NET ASSETS– Beginning of year
4,240,391
4,445,646
832,173 9,518,210 7,901,051
NET ASSETS– End of year
6,719,179 $ 6,301,552
$
$
867,302
$ 13,888,033
$ 9,518,210
See Independent Auditors’ Report. The accompanying notes are an integral part of these financial statements. annual report 2011 / 15
STATEMENT OF FUNCTIONAL EXPENSES For the Year Ended January 31, 2011, with Comparative Totals for 2010 PROGRAM ACTIVITIES SUPPORTING ACTIVITIES TOTAL EXPENSES
PATIENT AND PUBLIC AND RESEARCH COMMUNITY PROFESSIONAL TOTAL GRANTS SERVICES EDUCATION TOTAL FUNDRAISING ADMINISTRATION
2011
2010
EXPENSES BEFORE DEPRECIATION Grant awards
$
2,605,336
$
265,673
$
2,871,009
$
2,871,009
$ 4,389,253
2,177,107
4,429,338
4,746,686
Salaries, temporary help, and related expenses
25,689
1,251,810
6,452
$
974,732
2,252,231
$
1,171,130
$
1,005,977
$
685,634
131,041
823,127
116,198
5,257
121,455
944,582
747,280
235,000
336,684
573,734
1,145,418
1,427,161
182,256
1,609,417
2,754,835
1,058,810
182
30,040
20,062
50,284
81,366
17,534
98,900
149,184
447,938
137,012
122,770
259,782
150,097
162,171
312,268
572,050
619,058
93,201
479,002
418,839
991,042
77,610
92,442
170,052
1,161,094
1,033,395
3,142
54,566
20,102
77,810
40,709
42,772
83,481
161,291
143,168
11,493
4,073
15,566
9,420
7,966
17,386
32,952
25,372
17,582
2,214
20,396
26,576
36,895
63,471
83,867
93,782
156,141
156,141
156,141
177,683
30,856
4,969
35,825
59,920
64,930
124,850
160,675
163,016
Printing, publications, and public service announcements Professional fees and contract services Postage and shipping Rent and occupancy Travel and conferences Telecommunications Office supplies Dues and subscriptions
600
Bad debt expense Miscellaneous Total expenses before depreciation
2,969,602
3,300,352
2,272,536
8,542,490
3,160,187
1,774,341
4,934,528
13,477,018
13,645,441
DEPRECIATION
11,256
61,107
22,513
94,876
130,314
40,201
170,515
265,391
259,227
$ 13,742,409
2011 TOTALS
$
2,980,858
$
3,361,459
$
2,295,049
$
8,637,366
$
3,290,501
$
1,814,542
$
5,105,043
2010 TOTALS
$
4,471,709
$
3,766,537
$
1,982,730
$ 10,220,976
$
2,209,779
$
1,473,913
$
3,683,692
$ 13,904,668
PERCENTAGE OF TOTAL EXPENSES 2011 2010
21.7%
24.5%
16.7%
62.9%
23.9%
13.2%
37.1%
100.0%
32.2%
27.1%
14.3%
73.5%
15.9%
10.6%
26.5%
100.0%
See Independent Auditors’ Report. The accompanying notes are an integral part of these financial statements. annual report 2011 / 16
STATEMENT OF cash flows January 31, 2011, with Comparative Totals for 2010
FOR YEAR ENDED JANUARY 31, 2011 2010
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 on marketable securities Gain on beneficial interest in perpetual trusts Contribution of equipment Noncash contributions to investments Change in value of charitable remainder trusts Changes in operating assets and liabilities: Receivables: Bequests Chapters, net Pledges, net Other Prepaid expenses Other assets Grants payable Accounts payable and accrued expenses Annuity payment liability Deferred rent Net cash provided by operating activities
4,369,823
$
1,617,159
265,391 259,227 (258,980) (472,259) (35,129) (16,456) (22,817) (109,040) (211,150) (105,420) (149,440) (523,610) 1,322,921 85,893 15,807 (18,755) (4,860) (2,040,848) 126,124 (14,877) 67,978 3,119,601
(357,979) (656,432) 605,877 3,899 186,614 (5,784) 629,453 (36,608) (21,754) 42,835 1,417,202
Proceeds from sold and matured investments Purchases of investments Purchases of property and equipment Net cash provided by investing activities
551,611 (444,419) (30,039) 77,153
1,165,693 (369,150) (22,455) 774,088
NET CHANGE IN CASH AND CASH EQUIVALENTS
3,196,754
2,191,290
CASH AND CASH EQUIVALENTS–Beginning of year
6,143,722
3,952,432
CASH AND CASH EQUIVALENTS–End of year
9,340,476
6,143,722
CASH FLOWS FROM INVESTING ACTIVITIES
$
$
Consolidated Financial Summary, National Office and Chapters For the Year Ended January 31, 2011 TOTAL COMBINED REVENUE $52,746,217
PERCENTAGE TOTAL COMBINED TO TOTAL EXPENSES EXPENSES Research $2,980,858 6.38% Other program activities $29,462,868 63.07% Fundraising $8,754,012 18.74% General & administration $5,514,201 11.80% Total expenses $46,711,939
100.00%
Change in net assets: $6,034,278
The consolidated summary has not been audited or reviewed by the auditors and is not part of their financial reports.
See Independent Auditors’ Report. The accompanying notes are an integral part of these financial statements. annual report 2011 / 17
NOTES TO THE FINANCIAL STATEMENTS January 31, 2011 with Comparative Totals for 2010
NOTE 1––Description of Operations and Summary of Accounting Policies The Association
Basis of Presentation
Use of Estimates
The Amyotrophic Lateral Sclerosis Association (The Association or ALSA) 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 ALSA Centers.
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.
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
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). ALSA 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 ALSA, they are independently controlled by their own governing boards.
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, 2010, from which the summarized information was derived.
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. 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.
annual report 2011 / 18
NOTE 1––Description of Operations and Summary of Accounting Policies CONT. Financial Risk
Contributions and Bequests
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.
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.
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.
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.
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.
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 permanently restricted support, 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 permanently restricted gains or losses.
Contributed services are reported at fair value in the financial statements for voluntary donations of services when those services (1) create or enhance non-financial assets or (2) require specialized skills provided by individuals possessing those skills and are services that 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
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.
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.
annual report 2011 / 19
NOTE 1––Description of Operations and Summary of Accounting Policies CONT. Chapter Support
Research Grant Expense
Allocation of Joint Costs
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. At January 31, 2011 and 2010, receivables from chapters resulting from revenue sharing totaled $2,722,453 and $3,911,373 and were recorded net of a reserve for doubtful collections of $440,635 and $284,494, respectively.
Conditional research grants (see Note 5) are expensed by ALSA as the researchers substantially meet the terms and conditions of the grant during the grant period. Unconditional research grants are expensed when made.
The Association is permitted through accounting guidance to allocate to its programs a portion of its costs associated with its fundraising efforts.
From time-to-time, The Association may advance funds for working capital needs to affiliated chapters. Generally, repayment of the advances begins one year from the date of the last advance installment. Repayments of these advances are made annually by the chapters over a three-year period. Advances receivable from chapters amounted to $92,000 and $226,000 at January 31, 2011 and 2010, respectively. 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.
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.
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. Subsequent Events
The Association has evaluated subsequent events and transactions for potential recognition or disclosure through June 3, 2011, the date financial statements were available to be issued.
annual report 2011 / 20
NOTE 2––Investments in Marketable Securities
NOTE 4––Property and Equipment
Investments in marketable securities consist of the following:
Property and equipment consists of the following:
JANUARY 31,
2011
2010
Mutual funds $ Equity securities Corporate bonds U.S. Government agency obligations
1,237,291 $ 1,172,368 943,624 751,558 51,409 48,573 98,352 97,349
2,330,676
$
$
2,069,848
NOTE 3––Pledges Receivable
Furniture and equipment $ Software Leasehold improvements Less accumulated depreciation and amortization $
JANUARY 31,
2011
2011
745,101 $ 700,740 314,806 314,821 185,327 176,816 1,245,234 1,192,377 (966,206) (700,814) 279,028
$ 491,563
NOTE 5––Commitments
The Association anticipates collection of outstanding pledges receivable as follows: JANUARY 31,
2011
2010
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
328,837 $ 287,012 189,125 332,700 15,000 40,000 532,962 659,712 (29,087) (43,677) (5,330) (31,597)
498,545
$
$ 584,438
Amounts presented above have been discounted to present value using rates ranging from 1.65% to 4.75%.
Research Grants
The Association enters into conditional commitments semiannually to award scientific research grants. Research grants are awarded after review by ALSA’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. Subject to the grantees’ meeting the applicable terms and conditions timely, conditional grants awarded to date will become payable as follows: YEAR ENDING JANUARY 31,
2012 $ 3,083,627 2013 638,911
$ 3,722,538
Except as previously provided for by restricted gifts (see Note 3), the Association’s ability to meet these grant commitments may be dependent on future contributions to be received.
annual report 2011 / 21
NOTE 5––Commitments CONT. Leases
The Association leases offices in California, Illinois, New York, New Hampshire, and Washington, D.C. under operating leases expiring through March 2017. The leases require monthly rental payments and contain certain escalation clauses. In addition, ALSA pays a pro-rata share of real estate taxes and other operating expenses. Deferred rent payment obligations result primarily from recognition of rent expense on a straight-line basis over the lease period. Minimum rental payments due under the leases are as follows: YEAR ENDING JANUARY 31,
2012 $ 2013 2014 2015 2016 Thereafter
$
$321,000 for the years ending January 31, 2012 and 2013, respectively. Should the agreement be cancelled, the Association may be subject to cancellation fees contingent on the ability of the rooms to be resold.
NOTE 6––Temporarily Restricted Net Assets As of January 31, 2011, net assets are temporarily restricted for the following purposes: Research awards $ Other programs $
5,294,336 1,007,216 6,301,552
NOTE 7––Permanently Restricted Net Assets 525,510 526,016 540,778 555,957 512,143 36,708 2,697,112
Rent and occupancy expense under the current and prior leases amounted to $572,050 and $619,058 for the years ended January 31, 2011 and 2010, respectively. 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 $309,000 and
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 $627,000 and $593,000 at January 31, 2011 and 2010, respectively. Permanently restricted net assets also includes research endowment principal of approximately $240,000, which is held in perpetuity to generate earnings to support research expenditures.
NOTE 8––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 $102,125 and $109,352 for the years ended January 31, 2011 and 2010, respectively.
NOTE 9––Fair Value Measurements 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.
annual report 2011 / 22
NOTE 9––Fair Value Measurements CONT. Leases
The three levels of the fair value hierarchy are as follows: • 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 that are measured at fair value on a recurring basis at January 31, 2011:
FAIR VALUE MEASUREMENTS AT JANUARY 31, 2011
Level 1
Level 2
Level 3
Total
ASSETS
Investments in marketable securities
$ 2,180,915
$ 149,761
Beneficial interest in perpetual trusts
$ 2,330,676
$ 627,669 627,669
Contributions receivable from charitable remainder trusts 303,793 303,793
$ 2,180,915
$ 149,761
$ 931,462
$ 3,262,138
annual report 2011 / 23
THE LEGACY SOCIETY The important people below share a desire to make a lasting difference in the fight against ALS. They each chose to do this by making provisions in their estate plans to provide support for The ALS Association’s programs of research, patient services, education, awareness, and advocacy. * = chartered members / † = deceased Anonymous (22)
Dorothy Barth
Andrew T. Brophy
Anonymous in memory of Bernard Johnson
Mrs. Margaret A. Beans*
Mady Brown in loving memory of my parents, Rose and Selwyn Cohen
Anonymous in loving memory of William J. L’Heureux
Joe Ann Bearly† Mr.† and Mrs.† Avery J. Beer* Rick Beers*
Martha and Bert Brown Nelle H. Bruce†*
Anonymous in loving memory of Ross
Frank W. Begemann
Anonymous in loving memory of my father, Henry M. Unger
Rhea M. Berger Sharon T. Betzelberger*
Frederick and Elizabeth Burcaw in memory of Iva Burcaw and Ralph Frederick
Ethel Adler
Terry L. Betzelberger*
Betty J. Burritt†*
Kent and Dara Alexander*
Christain Olav Bing
Donald Alker
Gary L. and Elizabeth M. Bishop in loving memory of Alex McKelvey
Mr. and Mrs. Denny Burroughs in loving memory of Virginia Doty Burroughs
Thomas P. Anderson, Jr.* Dorothee P. Angel* Anna M. Arnold in loving memory of my son, John W. Arnold Mrs. Dorothy Austin John† and Denise Matuszewski Mary Beth Baker in memory of my husband, Gary
Dr. Kirk Benson
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
Margot K. Baldwin in memory of Irene Billingham and Joseph Almirall
Gary and Amy Bobo in memory of Margaret B. Peugeot
Lester Baltimore in memory of my wife, Sue Levering
Carol J. Booth and Family in memory of E.G. Booth
Jeff and Trina Bandelow Fanny Barnes†
Louis G. Booth† in loving memory of my wife, Katie
Lawrence and Isabel† Barnett
Joan Borowsky
Marvin and Dulce Barofsky
Mrs. Michael W. Bowen†
Arthur H. Barrett†
Mr. and Mrs. Schuyler L. Brooks
Doris M. Bomgardner
Margaret A. Bruening
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 Cape Rider Trust in memory of Barbara Lee Schneider John C. Carmody Mr. John H. Carrington in memory of my brother, Dick Carrington Mr. Robert F. Cavedo* Jayne M. Cawthern Doris M. Charles in honor of Richard Charles Don G. Chatlien in loving memory of my wife, Doree M. Chatlien Mrs. Mary Thuss Cheney† in loving memory of my mother, Gladys F. Thuss
Dr. and Mrs. Richard Chessick in loving memory of Edward Friedman Lance Christian Michael Citra†* Richard L.”Dick” Clark in memory of Donna Clark Joe and Eleanor† Codomo in loving memory of our son, Robert Vincent Selwyn S. Cohen†* Lillian Colbert in memory of Mark Colbert Beverly E. Collingwood in loving memory of Alfred A. Keith Beckie and David Cooper Christine Creed†* 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 The Honorable Jay Daugherty and Mrs. Lyn E. Daugherty* Helen K. de Kanter†* Ellen Dennis Harold and Elizabeth Dettinger in honor of Emma Dettinger Mrs. Haroldyne Dickinson† in memory of my husband, Howard I. Dickinson annual report 2011 / 24
THE LEGACY SOCIETY CONT. Robin R. Ganzert in memory of Michael Aheron Elaine Dutka Eugene R. Gardiner in celebration of the life of my dad, Leonard Dutka. In memory of my husband, John H. Gauger Len Dutka, with thanks to former patient in memory of my wife Sandy representative Mary Lyon Nancy George Catherine E. Easter in memory of my beloved husband, Ernest George Alfred D. Egendorf† in memory of son Frederic Donna Giardina in loving memory of Pam Maxwell Kathleen M. Elkins, Ed.D. in loving memory of my husband, Marbeth W. Gibson Robert J. Elkins in memory of Thomas C. Whitney, beloved brother LaVon Elsen in loving memory Jane H. Gilbert of my husband, Bernie Elsen Roger and Maxfalda Gleckman Sheila† and Richard Essey* Rose B. Gorin†* Mr. and Mrs.† Glen Ethier* Linda Gottlieb* Marilyn J. Fall Cynthia A. Greene in memory of Wayne L. Stiede V.E.† and M.H. Dornbach, Jr.*
William A. Harrison, Jr.* in loving memory of my life partner, Michael B. Huntley Philip† and Joan Hart†* Estate of Paul F. Hart Michael W. Havlicek* Karl W. Helft in memory of Raquel P. Helft, loving wife and mother August G. Hiebert† Jack Hilderbrand* Kent Hill in memory of my wife, Sandra Hill Eleanor N. Hill†
Emma M. Hohlfield
Allen L. Finkelstein
Karla Sue Gunn and John B. Gunn*
Donald H. Flanders
Elizabeth A. Guon†*
Mimi Holcombe in loving memory of my mother
John F. and Mary Louise Fogarty†*
Barbara M. Hadley* in memory of Charles E. Younkman
Scott Fox in loving memory of Arthur and Vera Fox Mary Kay† and John G. Fry Howard and Jodie Furbee in celebration of the life of Velma Zeigler Folck Floyd Gadt*
Bettye J. Kavich Rosamond Keough in loving memory of John J. Keough John C. Keyes† John R. Kicklighter in memory of Vera Mae Kicklighter Robert T. Kimbrough
Lynn M. Klein*
Al Hoffman
Dorothy Komarek
Alfred J. Hoffman†*
Shannon and Joe Komsky in loving memory of Barry Komsky
Anne S. Cowie Marie L. Holle in loving memory Clayton R. Demo
Burt Holtzman Stanley and Maureen Hall in memory of Pauline Holtzman in memory of my mother, Helen Coulthard Mrs. Sally Horner Wendy L. Hall to honor my father, Ty Hall, Barbara Hummel who gave me so much love in loving memory of Mark L. Tomchin Terry Halpin*
Wilbur Hutchins†
Kim A. Hanna
Floyd N. Iverson† in loving memory of my wife, Viola M. Iverson
Velma L. Hanson† in loving memory of my husband, Richard H. Hanson
Mary S. Kassabian
Marvin† and Joan Kloehn
The Reverend Joseph Grosko
Ruth J. Fox†
Ray Jordan in loving memory of my wife, Sally A. Jordan
David and Debra Hirschfeld in memory of Mary Elizabeth Roche’
Frank Ferrara†
Herbert A. Hale
Steven B. Jones
Shelley King in memory of Lynn Smith of Maine
Deborah L. Greene
Jane Fosler† in loving memory of my husband, Keith Fosler
Orville E. Johnson†*
Chuck and Mares Hirchert in loving memory of my mother, Margaret Westbrook Hirchert
Evelyn J. Ferngold in loving memory of my mother, Dora Broomfield Ferngold
Mrs. Jane T. Gregory†* in memory of S.L. (Paul) Gregory
Kimberly Johnke
Marie K. Kovacic† in memory of my daughter, Katherine Kovacic Dolley Wilson N. Krahnke Melanie Krebs Ms. Andrea Krill in loving memory of my father, Peter Krill Cindy La Montagne in loving memory of my amazing husband, David E. La Montagne, Sr. Peter B. Landecker* in memory of Dr. Louis Landecker Mrs. Mildred N. Landecker in memory of Dr. Louis Landecker Gordon L. Larsen, M.D.
annual report 2011 / 25
THE LEGACY SOCIETY CONT. Syble Early Lashley in memory of my mother, Irene Sitton Early Martha and Brian Law in loving memory of John Hovenden
Leonora O. Masterson Laila Matthews Edith Mattmiller† John A. Mayott†*
Hazel M. Lawson†*
Jane L. McBride†*
David Lazarus†
Rosezell McCarty-Oliver in loving memory of Lawrence McCarty
Randy Vance Morgan in honor of my mother, Mahaley Sudie Morgan Annette and Stuart Morris J. Kent Morrison in loving memory of my wife, Jeanne Morrison
Genevieve† and Sean Newton* for Lowell Newton Florence R. Neyer Rodney W. Nichols Tom Niemeier The Raymond R. Nieves Family Trust
Karen A. Moschetto in memory of my uncle, Arthur Johnson
Richard A. Nimphie
Aubrey McCauley C. Thomas McClintic and Sandra McClintic
David Moses
Earle and Catherine O’Donnell
Louis and Jocelyn Libby
Susan and Kevin McCormack
Lillian Moskowitz†*
Lynn C. O’Hara
Karen Lienau
Ms. Susan McCray*
Lillian Moss
Doris L.† and John M.† O’Hare*
Janet L. McCrory
Wesley W.† and Lynne E.† Movitz
Benjamin S. and Dorothy F. Ohrenstein*
Laura McCrum*
Louis Mufich in loving memory of my wife, Minerva J. Mufich
Blanche J. Owens in memory of my husband, Joseph D. Owens
Mr. and Mrs. Larry Munoz in loving memory of my dad, Reuben Munoz, Sr.
Elouise Pacitti† in memory of Robert, loving husband and father
Mrs. John W. Musick in loving memory of my son, Charles Whitley Musick
Lauraine Painter†* in memory of Edwin J. Painter
Mrs. Rena L. Myrick in loving memory of my husband, F. Guilford Myrick
The Parsons Family Trust in loving memory of Hilda Freese
Gary A. Leo Kenneth E.† and Barbara J. Levin in memory of Gail Levin Peterzell
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 Dee Dee Lowland*
Edmund G. McCurtain 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 Marie A. Mildram
Catena and Frank Passalacqua
Alice Nedelec* in loving memory of Marie A. Nedelec
J.R. and Margy Patterson in loving memory of Linda M. Patterson
Anita Nelkin†
Katherine P. Payne† in loving memory of my brother, Stuart MacMackin
Charles and Nancy Miller in loving memory of Stanley Drexler
Gloria Salerno Maehl and Gary Maehl in loving memory of Dr. Charles Salerno
Mr. and Mrs. Joseph Miloscia* in loving memory and in honor of Mrs. Patricia Ciccarello
in loving memory of my husband, William Nelkin
Mrs. James S. Mims
Ruth Neuman*
Eileen Mittleman in loving memory of my father, Ben Mittleman
Anamarie Neumiller in memory of my father, Louis B. Neumiller
Margaret and Walter Molony
Gerda Newbower
Maria Montalbano
Sean Newton* for Lowell Newton
Barbara Martin in loving memory of my husband, Wayne O. Martin
Thomas W. Palmer
Evelyn Nasielski
Marjorie MacClean in loving memory of Edward W. MacClean
Nicolas Mares† in loving memory of Delia, dear wife and mother
Jeremiah J. O’Brien
Barbara Nestingen
Warner A. Peck†* Andrea L. Perr in memory of my brother, Geoffrey S. Perr Mrs. David V. Perry* John E. Perry, Jr. in loving memory of Charlotte P. Gromberg annual report 2011 / 26
THE LEGACY SOCIETY CONT. Claire Whitaker Peterson in memory of my son, E.F. Wallengren Thomas C. Peterson Mary Jo Peyton in memory of my brother, John E. Peyton, Jr.
Carl and Becky Rizzuto in loving memory of our mom, Antoinette Carvelli Ms. Jean M. Roldan in honor of Paulette Gasne
Judith Shelton Corliss Sherry my heart, my love––Clayton L. Sherry
Peter Strugatz* Judy Stuart in memory of my husband, Alan A. Stuart
Ellyn C. Phillips
Juan C. Ros
Kathleen McGuire Pierce in loving memory of six family members with ALS
Mr. Richard Rose
Marilyn Simon-Gersuk & David Gersuk
Anita M. Pollak in memory of Mervin Channing Pollak Viola E. Porter† Lillian B. Potts† 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
Gerald and Concetta Ross
Merrill K.† and Hazel P.† Smith
Richard S. Roth
Frances Virginia Smith
Janis M. Rothermel
Elliot and Linda Smith in loving memory of my father, William Wallace Smith
Murray Rothstein in memory of Jacqueline S. Rothstein Jeff Rowe in memory of Frank Rowe Richard J. Ryan† Robert Rynalski Ronald R. Salbenblatt†
Robin L. Quigley, Captain U.S. Navy (Ret.)
Mrs. Annette Powell Salerno in memory of Charles, beloved husband
Dean Rasmussen*
Thomas A. Scamuffa
Rasmussen Foundation
Carol L. Schaerer in loving memory of my sister, Robertine Massey Boyer
Mary Alice Reddick Mrs. Martha N. Rees† in memory of Deacon Paul J. Rees Bruce† and Sherrie Reid Margaret V. Reustle in loving memory of my husband, William
Robert L. Schenck* Frances Friedman Schloss in loving memory of my late husband, Justin Friedman Donald Schmidt
Harry E. Rice, M.D.*
Ben F. Sears
K. Lorraine Edstrom Rice*
John and Barbara Seibert
Kelli Richmond
Norma M. Shearer† in loving memory of Ralf De Moathe
Mrs. Helen T. and Ms. Jennifer T. Rimerman in loving memory of Morton W. Rimerman
Edythe B. Sheinbaum in loving memory of my husband, Milton
James and Prudy Streem Trust
Nancy E. Shire Ruth Shively in loving memory of my son, Michael Shively
N. Anthony Rolfe
in loving memory of my wife, Helen Virginia Strachan
Mrs. Mary E. Snell Kirsten Anne Nystrom Snyder and Brandt Edward Snyder
Gregory M. Stuart a tribute to my friends who have lived with ALS Glenn Suhr Ed Sukla Pauline Sims Swain† in memory of my friend, Koziell Poklewski. He lived with ALS for 12 years. Arthur B. Swanson Renata Tagliacozzo
Patricia Snyder and family in memory of Thomas T. Snyder
Jerry Taylor in celebration of the life of Russell Jackson
Marion J. Solow†
Maybelle M. Taylor† in loving memory of Frederick A. Taylor
Theresa Ridgway Soracco Mr. and Mrs. Robert L. Sorenson,* in memory of Wayne L. Stiede
Steven L. Ross† and Carol L. Thacher* Kathryn and James Thomas
James O. Speer†*
Lori Tiller
Dr. and Mrs. Charles J. Spengler
John Timko
Laura and Sarah Stanley in memory of my mother, Sylvia R. Stanley, and all the members of her family who have suffered from ALS
Mary Nancy Todd in loving memory of my mother, Nancy Dunn Procter
Karen Starleaf-Abounayan* Mr.† and Mrs. Gordon F. Stewart* in memory of Jerome S. Love, M.D. Ralph R. Stillwagon in loving memory of Eleanor Stillwagon, dear mom Elaine F. Stone†* Clifford E. Strachan*
Dorothy E. Travinek in loving memory of my uncle, Michael Smiles Judith and David† Travis Monte Tudor-Long Doug† and Loretta Turner Elizabeth Twist Judith Uhlman
Helen Rimerman annual report 2011 / 27
THE LEGACY SOCIETY CONT. Mr.† and Mrs. Roy Uhlman Mert and Pat Urness in memory of brother Gary A. Urness Vincent G. Uttley* in celebration of the life of Michael Rice Bertschy Nancy Van Wyhe in loving memory of my husband, Conley Van Wyhe Mr.† and Mrs. Theodore H. Vandling Frank C. and G. Maxine Vasek* Rosa C. Vàsquez Electra Venetsanos†* Henry Vera in memory of my loving wife, Lorraine Vera Charles H. Viens* Ellen C. Voie George W. Wagner* Robert F. Wallace in memory of Marilyn Battelli, cherished wife, mother, daughter, and beloved sister
Clifford W. Wauters, M.D.† in loving memory of Helen, beloved wife and mother
Darlene Woodall in loving memory of my mother, Arlene Rushing Lowe
Eunice Weed Estate of Marshall Wetstone
Kenneth Workman and Jennifer Workman Living Trust in memory of my beloved uncle, Gilbert Klein, D.D.S.
Mr. and Mrs.† Carlyle Whistler in loving memory of my father, Everett Garrison
Katherine M. Wulf in loving memory of my dear friend, Floyd V. Alguire
Jean G. White in memory of my beloved mother, Marie Griffin, and my loving sister, Elaine Gibler
David W. Wurth
Ken and Alma Wiegand in loving memory of Toshiko Densford
Mrs. Robert E. Zimmerman†
Sam† and Karolyn Welty*
Alonzo S. Wyatt†* Patrick M. Ziegenhorn
Clayton Williams James S. Williams† Laural Winston* Sharon Wlosek Mary Sylvia Wolfrey† in loving memory of my husband, Bill Wolfrey Harriet M. Wollerstein
Mr. and Mrs. Daniel J. Walsh†*
Victor L. Wolmer†
Lucille J. Walter
Agnes C. Wood†
Rev. Charles W. Ward Renee and Charles, Love Always/Together Always C.J. Ward
annual report 2011 / 28
THE ALS ASSOCIATION CERTIFIED CENTERS These clinical care facilities have been certified by The ALS Association as having met a rigorous standard of quality care for ALS patients. Each has a multidisciplinary team approach to provide a continuum of care as well as appropriate diagnostic capabilities. These Centers of Excellence provide a uniform standard of quality care regardless of race, color, or creed. Banner Good Samaritan Regional Medical Center 1012 E. Willetta Street Phoenix, AZ 85006 602/839-6305 Director: Todd Levine, M.D. Mayo Clinic Scottsdale 13400 E. Shea Boulevard Scottsdale, AZ 85259 480/301-8000 Director: E. Peter Bosch, M.D. Co-Director: Mark A. Ross, M.D. Forbes Norris ALS Research Center California Pacific Medical Center 2324 Sacramento Street San Francisco, CA 94115 415/923-3604 Director: Jonathan Katz, M.D. The ALS Center at the University of California, San Francisco 350 Parnassus Avenue, Suite 500 San Francisco, CA 94117 415/476-7581 Director: Catherine Lomen-Hoerth, M.D., Ph.D.
Neuromuscular ALS Clinic Hospital for Special Care 2150 Corbin Avenue New Britain, CT 06053 860/827-4924 Director: Kevin Felice, D.O. George Washington University Department of Neurology– ALS Center 2150 Pennsylvania Avenue NW, 7-401 Washington, D.C. 20037 202/741-2700 Director: Elham Bayat M.D. Mayo Clinic Jacksonville Department of Neurology 4500 San Pablo Road S Jacksonville, FL 32224-1865 904/953-2000 Director: Kevin Boylan, M.D. Georgia Health Sciences University Department of Neurology, EMG Lab 1120 15th Street Augusta, GA 30912-0004 706/721-4581 Director: Michael H. Rivner, M.D.
Indiana University ALS Center at Wishard Health Services 1050 Wishard Boulevard Neurology Dept. Regenstrief 6th Floor Indianapolis, IN 46202 317/915-9888 Director: Robert J. Pascuzzi, M.D. University of Kansas Medical Center 1008 Wescoe 3901 Rainbow Blvd. Kansas City, KS 66160-7314 913/588-0613 Director: April McVey, M.D. Co-Director: Richard J. Barohn, M.D. University of Kentucky/Cardinal Hill ALS Clinic 2050 Versailles Road Lexington, KY 40504 859/323-7852 Director: Ed J. Kasarskis, M.D., Ph.D. Lahey Medical Center Curt and Shonda Schilling ALS Clinic Department of Neurology 41 Mall Road Burlington, MA 01805 781/273-8000
Director: James Russell, D.O. Motor Neuron Disease Center University of Michigan Health System Department of Neurology 1914/0316 Taubman Center 1500 E. Medical Center Drive Ann Arbor, MI 48109-0316 734/936-9010 Director: Kristen Gruis, M.D. Harry J. Hoenselaar ALS Clinic Henry Ford Hospital 2799 West Grand Blvd. K-11 Neurology Detroit, MI 48202 313/916-2835 Director: Daniel S. Newman, M.D. Hennepin Faculty Associates Neuromuscular Center 825 South Eighth Street, Suite 250 Minneapolis, MN 54404 612/347-7635 Director: Ezgi Tiryaki, M.D. Mayo Medical Center Mayo Clinic Rochester Department of Neurology 200 First Street S.W. Rochester, MN 55905 507/284-4409 Director: Eric J. Sorenson, M.D.
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THE ALS ASSOCIATION CERTIFIED CENTERS CONT. St. Louis University Health Sciences Center Department of Neurology/ Neuromuscular Clinic 3635 Vista Avenue at Grand Boulevard St. Louis, MO 63110 314/577-8026 Director: Ghazala Hayat, M.D.
The ALS Center Beth Israel Medical Center Phillips Ambulatory Care Center 10 Union Square East New York, NY 10003 212/720-3050 Director: Stephen Scelsa, M.D. Co-Director: Daniel J. MacGowan, M.D.
Dartmouth Hitchcock Medical Center ALS/Neuromuscular Disease Clinic One Medical Center Drive Lebanon, NH 03756-0001 603/659-1881 Director: Jeffrey A. Cohen, M.D.
The Christopher Pendergast ALS Center of Excellence Stony Brook University Hospital 179 Belle Meade Road, Suite 3 East Setauket, NY 11733 631/444-4623 Director: Rahman Pourmand, M.D. Co-Director: Nurcan Gursoy, M.D.
Neuromuscular and ALS Center Robert Wood Johnson University Hospital UMDNJ – Robert Wood Johnson Medical Center 97 Paterson Street New Brunswick, NJ 08903 732/235-7340 Director: Jerry M. Belsh, M.D.
ALS Center SUNY Upstate Medical University 750 East Adams Street Syracuse, NY 13210 315/464-2480 Director: Jeremy N. Shefner, M.D., Ph.D.
University of New Mexico School of Medicine Department of Neurology 2211 Lomas, N.E. MSC 10 5620 Albuquerque, NM 87131 505/272-3342 Director: Sarah Youssof, M.D.
Wake Forest Baptist Medical Center ALS Center Department of Neurology 3rd Floor, Meads Hall Medical Center Blvd. Winston-Salem, NC 27157-1078 336/716-9056 Director: James B. Caress, M.D. Duke University Medical Center ALS Center 932 Morreene Road Box 3333 Durham, NC 27705 919/668-2838 Director: Richard S. Bedlack, M.D., Ph.D.
Center for ALS and Related Disorders Department of Neurology The Cleveland Clinic Foundation 9500 Euclid Avenue Cleveland, OH 44195 216/444-5559 Director: Erik P. Pioro, M.D., Ph.D., F.R.C.P. Providence ALS Center The Oregon Clinic, Department of Neurology 5050 NE Hoyt, Suite 315 Portland, OR 97213 503/963-3100 Director: Kimberly Goslin, M.D. Penn Comprehensive Neuroscience Center The University of Pennsylvania 330 S. Ninth Street Philadelphia, PA 19107 215/829-3053 Director: Leo McCluskey, M.D. The ALS Clinic at Penn State Milton S. Hershey Medical Center Department of Neurology, H037 500 University Drive Hershey, PA 17033 717/531-1802 Director: Zachary Simmons, M.D. University of Texas Health Science Center San Antonio Department of Neurology 7703 Floyd Curl Drive San Antonio, TX 78284-7883 210/567-1945 Director: Carlayne E. Jackson, M.D.
Baylor College of Medicine 6550 Fannin Suite 1801 (Smith Tower) Houston, TX 77030 713/798-7411 Director: Yadollah Harati, M.D. University of Vermont College of Medicine ALS Clinical Department of Neurology C225A Given Building 89 Beaumont Avenue Burlington, VT 05404 802/847-4589 Director: Rup Tandan, M.D., F.R.C.P., M.R.C.P. Virginia Mason Medical Center Neurology Department 1100 Ninth Avenue P.O. Box 900 M/S X7-NEU Seattle, WA 98101-2756 206/341-0420 Director: John Ravits, M.D. Medical College of Wisconsin Froedtert Hospital Department of Neurology 9200 W. Wisconsin Avenue Milwaukee, WI 53226 414/805-5264 Director: Paul Barkhaus, M.D.
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TEAMWORK––Chapters and Support Groups CHAPTERS––For the Period Ending January 31, 2011 Chapter Accountability: Subject to their agreements with The ALS Association, chapters are chartered as autonomous with their own accountability, and as such, develop independent fundraising campaigns to support the mission of The ALS Association through patient service and public education programs and the nationally directed research program. Please note that the state(s) in which the chapter has a presence is listed below each chapter name and location. Alabama Chapter Huntsville, Alabama AL
Rocky Mountain Chapter Denver, Colorado CO/WY
Iowa Chapter Johnston, Iowa IA
St. Louis Regional Chapter St. Louis, Missouri MO/IL
Arizona Chapter Phoenix, Arizona AZ
Connecticut Chapter Milford, Connecticut CT
Keith Worthington Chapter Mission, Kansas KS/MO/NE
Minnesota/North Dakota Chapter Minneapolis, Minnesota MN/ND
Arkansas CIO* Rogers, Arkansas AR
District of Columbia/Maryland/ Virginia Chapter Rockville, Maryland DC/MD/VA
Kentucky Chapter Lexington, Kentucky KY
Greater New York Chapter New York, New York NY/NJ
Louisiana/Mississippi Chapter Baton Rouge, Louisiana LA/MS
Upstate New York Chapter Syracuse, New York NY
Massachusetts Chapter Norwood, Massachusetts MA
The Jim “Catfish” Hunter Chapter Raleigh, North Carolina NC
Northern New England Chapter Concord, New Hampshire ME/NH/VT
Central & Southern Ohio Chapter Columbus, Ohio OH
Michigan Chapter Grand Rapids, Michigan MI
Northern Ohio Chapter Cleveland, Ohio OH
Golden West Chapter Los Angeles, California CA Greater Sacramento Chapter Sacramento, California CA Orange County Chapter Santa Ana, California CA Greater San Diego CIO* San Diego, California CA
Florida Chapter Tampa, Florida FL Georgia Chapter Atlanta, Georgia GA Greater Chicago CIO* Chicago, Illinois IL Indiana Chapter Indianapolis, Indiana IN
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CHAPTERS CONT.
PARTNER GROUPS
Oregon/SW Washington Chapter Portland, Oregon OR/WA
North Texas CIO* Dallas, Texas TX
New Mexico Partner Albuquerque, New Mexico NM
Greater Philadelphia Chapter Philadelphia, Pennsylvania PA/DE/NJ
South Texas Chapter San Antonio, Texas TX
Utah Partner Salt Lake City, Utah UT
Western Pennsylvania Chapter Pittsburgh, Pennsylvania PA
Evergreen Chapter Kent, Washington WA/ID/MT/AK
FREE-STANDING SUPPORT GROUPS
Rhode Island Chapter Warwick, Rhode Island RI
Wisconsin Chapter Milwaukee, Wisconsin WI
Puerto Rico Support Group Guaynabo, Puerto Rico Puerto Rico
South Carolina CIO* Charleston, South Carolina SC
Northern Utah Support Group South Ogden, Utah UT
Tennessee Chapter Nashville, Tennessee TN Greater Houston CIO* Houston, Texas TX
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LEADERSHIP Trustees and Executives Lawrence R. Barnett The ALS Association, Chairman Emeritus Rancho Mirage, California
Andrew T. Brophy Brophy Properties, Inc. Washington, D.C.
John P. Krave, Esq. Kaiser Foundation Health Plan, Inc. Pasadena, CA
The Honorable Jay Daugherty* The ALS Association Chairman Shaffer Lombardo Shurin Kansas City, Missouri
Robert J. Bjorseth Tech Inc. Lenexa, Kansas
Luis Leon Estero, Florida
Robin R. Ganzert, Ph.D.* The ALS Association Vice Chair President American Humane Association Washington, D.C. Benjamin S. Ohrenstein, Esq., CPA* The ALS Association Treasurer and Chief Financial Officer Haverford, Pennsylvania Laural Winston* The ALS Association Secretary Retired Chief Financial Officer TECHMER PM Palm Desert, California Robert V. Abendroth, Esq.* Whyte Hirschboeck Dudek S.C. Milwaukee, Wisconsin Lawrence R. Barnett, Esq* Gipson, Hoffman & Pancione Los Angeles, California
Phyllis R. Brourman, Esq. Beverly Hills, California Daniel de Grandpre Madison, Alabama Cynthia D. Douthat Atlanta, Georgia
William G. Matthews Naples, Florida Edmund G. McCurtain, II* Boulder Creek, California Valerie Harwell Myers, Ph.D. Pennington Biomedical Research Center Baton Rouge, Louisiana
Richard P. Essey* Chairman TemPositions San Francisco, California
Timothy O’Toole Chief Executive Officer Vitas Healthcare Corporation Miami, Florida
Allen L. Finkelstein, Esq* Pavia & Harcourt New York, New York
Ellyn C. Phillips* Chair The ALS Association Greater Philadelphia Chapter Ambler, Pennsylvania
Andrew Fleeson Scottsdale, Arizona Alan R. Griffith Centreville, Maryland Wilson N. Krahnke* Chevy Chase, Maryland
Elizabeth Heller Rosenberg* Director Haworth Library New York, New York Howard B. Safenowitz, Esq. Calabasas, California Stephen H. Saltzman* North Bergen, New Jersey William D. Soffel President Vacation Properties Realty, Inc. Chautauqua, New York William Thoet Senior Vice President Booz Allen Hamilton McLean, Virginia Kenneth Wiegand, Jr.* Senior Vice President Booz Allen Hamilton Herndon, Virginia *Executive Committee Members
Jonathan Roberts Executive Vice President, Rx Purchasing, Pricing and Network Relations CVS Caremark Lincoln, Rhode Island
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LEADERSHIP CONT. HONORARY TRUSTEES
NATIONAL OFFICE EXECUTIVE STAFF
Morton Charlestein Chairman Emeritus Premier Dental Products Company Plymouth Meeting, Pennsylvania
Jane H. Gilbert President and Chief Executive Officer
Joshua M. Javits, Esq. Dispute Resolution Services Washington, D.C. Artemis A.W. Joukowsky Providence, Rhode Island Lawrence A. Rand Senior Vice President Kekst and Company New York, New York Andrew J. Soffel Retired Chairman of the Board of Directors Crowley, Milner and Company Bonita Springs, Florida
Dan Reznikov Chief Financial Officer Stevan Gibson Vice President, Government Relations & Public Affairs Gordon Lavigne Chief Development Officer Sharon Matland Vice President, Patient Services Ken Nicholls Chief Chapter Relations Officer Lucie Bruijn, Ph.D. Chief Scientist
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The ALS Association alsa.org
1275 K STREET NW SUITE 1050 WASHINGTON DC 20005 PHONE 202 407 8580