Message from Our Leadership What a year! In 2014, the world experienced the biggest charitable phenomenon of all time: the ALS Ice Bucket Challenge. Last year, there were 90 million search results for ‘ice bucket challenge,’ and according to Google, the ALS Ice Bucket Challenge “turned a little-known disorder into a global conversation.” Seventeen million people uploaded their videos to Facebook, and these videos were watched by 440 million people, 10 billion times. The ALS Association is humbled to have received $115 million over a six-week period from people all over the world who were inspired by what three young men living with this dreaded disease created: hope. Anthony Senerchia, Pat Quinn and Pete Frates, who are all battling ALS and are now considered the co-founders of the challenge, managed to ignite more passion around this cause than anyone has before. Coincidentally, the ALS Ice Bucket Challenge occurred one month and seventy-five years after Lou Gehrig stood up in front of fans at Yankee Stadium and famously said farewell to baseball due to weakness (or complications) caused by the disease that now bears his name.
Seventy-five years is too long to go without a significant, life-prolonging treatment for ALS. At The ALS Association, we believe that the ALS Ice Bucket Challenge is a game changer. We are closer than ever to a treatment, and with continued support, we can get there. We are committed to strategically spending ALS Ice Bucket Challenge contributions over time in order to maximize the impact of your commitment to find the cure for ALS once and for all. In this annual report, we highlight this larger plan, which will be implemented over the next few years, as well as the activities and accomplishments that occurred within our most recent fiscal year—February 1, 2014, to January 31, 2015. Thank you to each and every person who is dedicated to this cause. Join us in transforming a moment into a movement. The ALS Ice Bucket Challenge will happen every August until there’s a cure.
“Wearecommittedtostrategically spendingALSIceBucketChallenge contributionsovertimetomaximize
Together, we can create a world without ALS! Very best regards, Barbara J. Newhouse, President and CEO Bill Thoet, Chariman, National Board of Trustees
2014 ALS ICE BUCKET CHALLENGE A brief history of the summer that changed the ﬁght against this disease forever
JULY 15 Pro golfer Chris Kennedy, challenges his wife’s cousin, Jeanette Senerchia, whose husband Anthony has ALS. “What started out as a small gesture to put a smile on Anthony’s face and bring some awareness to this terrible disease has turned into a national phenomenon, and it is something we never could have dreamed of,” Kennedy said. -TimeMagazine, August 18, 2015
Pat Quinn’s friends and family embrace the challenge, and it spreads to Pete Frates in Boston. Pete is the former captain of the Boston College baseball team. The ALS Ice Bucket Challenge picks up steam and soon all of Boston is doing it.
The ALS Association is incredibly grateful for the tremendous outpouring of support we received last summer. This time line demonstrates how the challenge unfolded and the incredible impact of social inﬂuence in the age of social media. Thanks to you, the world witnessed the generosity of the human spirit on a grander scale than ever before.
Jeanette Senerchia accepts the challenge and posts her video to Facebook. The challenge spreads throughout their hometown, Pelham, New York, and then to Pat Quinn, also living with ALS, in Yonkers.
Massachusetts Chapter Executive Director Lynn Aaronson takes the challenge on live TV with the NBC affiliate in Boston.
Hundreds of people take the ALS Ice Bucket Challenge in Copely Square in Boston. Boston.com openly challenges the cities of New York and Los Angeles to do the same.
AUG. 15 Bill Gates accepts Mark Zuckerberg’s ALS Ice Bucket Challenge and nominates Elon Musk, Ryan Seacrest and Chris Anderson from TED to participate and raise awareness for ALS.
AUG. 5 The ALS Association sees a lift of about $50,000 in fundraising over what it raised the previous year during the same time period.
$4M AUG. 12 The ALS Association puts out first press release about the ALS Ice Bucket Challenge, having raised (since July 29) a total of $4 million compared to $1.1 million during the same time period the previous year.
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Daily donations to The ALS Association come in under $1 million for the first time since August 10.
AUG. 21 AUG. 19 New York Yankees team captain Derek Jeter takes the challenge. Jeter acknowledges the legendary Yankee, Lou Gehrig, who suffered from ALS and retired from baseball at age 36. July 4, 2014, marked the 75th anniversary of Gehrig’s famous speech at Yankee Stadium.
$100M AUG. 29
Donations to The ALS Association peak at $11.3 million overnight. Unique website visitors to ALSA.org also peak at 4.5 million (compared with about 20,000 on a typical day before the ALS Ice Bucket Challenge).
Donations to The ALS Association top $100 million. The ALS Association President and CEO Barb Newhouse releases statement saying: “The word gratitude doesn’t do enough to express what we are feeling right now.”
Actor and Comedian David Spade, whose uncle died of ALS, donates $100,000 to The ALS Association.
The ALS Association receives a total of $13.3 million in donations since the start of the ALS Ice Bucket Challenge.
$80M $70M $60M
Homer Simpson takes the ALS Ice Bucket Challenge.
AUG. 25 Actor Leonardo DiCaprio takes the challenge and donates $100,000 to The ALS Association.
$50M $40M $30M $20M
$10M AUG. 18 Tonight Show host Jimmy Fallon takes the ALS Ice Bucket Challenge and nominates the New York Jets.
The ALS Association National Office Administra on $1.9M - 5%
Fundraising $6.0M - 15% Public and Professional Educa on $3.4M - 9%
Research $13.6M - 35%
2015 Financial Summary $115 million in revenue from The ALS Ice Bucket Challenge came in during August and September 2014. The Association’s fiscal year ended on January 31, 2015. Moving quickly, we were able to double the amount we contributed to research over the previous year—and put plans in place to spend the remaining dollars to drive forward our efforts to find treatments and a cure for ALS.
$39.2M Total Expenses
Pa ent and Community Services $14.3M - 36%
For a full summary of financials, please visit www.ALSA.org/financials2015. To view the most up-to-date figures on current and anticipated spending of the ALS Ice Bucket Challenge donations, please visit www.ALSA.org/ icebucketchallenge.
CHAPTERS $13.8M - 10%
Contribu ons $121.4M - 88%
National Office and Chapters Bequests $2.0M - 1% Other Income $1.4M - 1%
$138.6M Total Revenue
The following unaudited summary reflects Association-wide financial activity for the year ended January 31, 2015.
Total combined revenue - $214,809,102 Expenses: Research - $13,610,936 Other Program Activities - $50,731,751 Fundraising - $13,707,129 Administration - $6,479,795
Total combined expenses - $84,529,611 Change in net assets - $130,279,491 Total combined assets - $190,439,667 Total combined liabilities - $12,835,534 Total combined net assets - $177,603,813
Research is directed by the National Organization and does not appear in the chapters’ financial statements
Accelerating therapies through ALS research Research is an essential part of The ALS Association’s approach to finding treatments and a cure for ALS. Thanks to your generous contributions, The Association was able to move quickly to double research spending during the fiscal year while committing millions of dollars to fund exciting new global initiatives that otherwise would not have been possible. ALS ACT - $10M ALS ACT is a novel academic-foundation-industry partnership to accelerate treatments for people living with ALS. Partners will enact a multi-pronged approach to expedite ALS clinical trials. NEW YORK GENOME CENTER - $2.5M The New York Genome Center’s Consortium for Genomics of Neurodegenerative Disease (NYGC CGND) will generate and analyze thousands of DNA sequences from people with ALS. THE NEURO COLLABORATIVE - $5M The Neuro Collaborative will combine the efforts of three leading California laboratories to discover and develop potential new therapies for ALS, which can be delivered to pharmaceutical companies for further development in clinical trials. This project has also enabled the establishment of an Induced Pluripotent Stem Cell (iPSC) Core Facility, which serves investigators globally. PROJECT MINE - $1M Project MINE, an international effort to sequence the genomes of at least 15,000 people with ALS, will launch efforts in the United States.
5 Key Areas of Research Focus • Gene discovery • Disease model development • Biomarker discovery • Drug development • Clinical trials
Increasing understanding around genetics This year, exciting progress around genetics and ALS has increased understanding of the disease, paving the way for the development of treatments. Discovered in 2011, scientists funded by The Association identified the most common genetic cause of ALS: C9orf72. This past year, exciting advances were made regarding how mutated C9orf72 causes toxicity in motor neurons, cells that die due to ALS. In one study, scientists used fruit flies to determine that abnormal protein production damages neurons. Two independent studies, both supported by The Association, found that a key driver in development of ALS due to the C9orf72 mutation is an export-import imbalance between the cell’s nucleus and its non-nuclear portion, the cytoplasm. The Association also partnered with two for-profit companies to pursue drug development to target disease progression involving this gene mutation.
Advancing clinical trials Additionally, research investments made in previous years resulted in notable progress. Scientists funded by The Association made important discoveries around ALS gene mutations, leading to new academic-industry contracts, including Genentech, GlaxoSmithKline (GSK), Aquinnah Pharmaceuticals and Neuroimmune AG to develop drugs to treat ALS. Antisense technology for neurodegenerative diseases targeting genes SOD1 and C9orf72, both implicated in ALS, were further developed this year, and clinical trials are expected to occur in 2016 and 2017, led by Biogen Idec. This progress can be directly attributed to The ALS Association’s early and continued investments in this area. The Association also announced funding for an ALS clinical trial with a novel use of the drug Retigabine, which is typically used to treat people who suffer from seizures. For additional information about The ALS Association research program, please visit ALSA.org/research.
Providing care and support for people living with ALS
The ALS Association is providing care and support to more than 14,000 people living with ALS and their families through our network of 39 chapters nationwide. Core programs include: support groups, home visits, equipment loan closets and care planning, as well as providing respite care, transportation and assistive technology devices and support. This past year, The ALS Association’s Certified Treatment Centers of Excellence™ program welcomed 12 new centers, which included the first ever Veterans Administration facility in Cleveland, Ohio, greatly expanding access to multidisciplinary care to members of the military, who suffer from ALS at twice the rate of the general population. Additionally, as a result of the ALS Ice Bucket Challenge, The Association hosted two important meetings to help educate people on ALS care. At The Association’s National Clinical Conference, 385 people attended and received continuing education units in various disciplines. The Certified Treatment Center of Excellence Medical Directors’ meeting brought together 30 senior medical professionals to collaborate on continuous improvement protocols for care management.
“This past year, The ALS Association’s Certified Treatment Centers of Excellence™ program welcomed 12 new centers...” Alice Baker and family
Witnessing hope, one bucket at a time For people living with the disease, the lack of general awareness of ALS can be a challenge. So last summer, when everyone was talking about the disease, what were people feeling and thinking? Patricia Stanco is a regional care manager at The ALS Association’s Florida Chapter. She hosts support groups for people with ALS and family members. On August 26, Patti sent an email to several of her colleagues: As has been the case at all ALS resource support group meetings this month – the North Port group excitedly wanted to talk about the ice bucket challenge.
An attendee said, The donations to the national organization have reached $55 million – can you believe it? I said, Um…. It’s actually $88 million. Let me check and see if it’s been updated – oh, it has. $94 million. Jaws dropped. Tears formed. The group was overwhelmed and for a distinct moment, silence. I realized I was witnessing hope. It was so powerful - I will never forget it.
Increasing awareness and urgency around our cause The ALS Association didn’t start the ALS Ice Bucket Challenge. But on behalf of people living with the disease and the campaign’s co-founders, The Association did everything we could to keep the momentum going. When the challenge started in early August, people immediately turned to The ALS Association for information about the campaign: how to participate, and how to donate. We moved quickly to embrace the ALS Ice Bucket Challenge, responding to public interest. The Association was able to grow our following on Facebook from 30,000 to more than 300,000 after the ALS Ice Bucket Challenge. Unique visitors to our
website went from an average of 20,000 per day to up to 4.5 million at the height of the challenge. Our strategy very early on was to operate with the utmost transparency, providing a daily accounting of dollars raised through the challenge. This helped fuel the ice bucket story, resulting in even more donations not just to The ALS Association but to other ALS charities worldwide. The Association was able to pivot on the success of the challenge by introducing Challenge ALS, an engagement tool to provide additional opportunities to get engaged in the cause that went “beyond the bucket.”
Advocating for regulatory and legislative change
NATIONAL ALS REGISTRY: The Association worked with Congress to secure nearly $8 million for the registry in FY2015, a more than 30 percent increase over FY2014. The funding will support research projects designed to find the causes of ALS; reports examining risk factors; collection of ALS incidence, prevalence and demographic data; and continued efforts to increase and speed enrollment in clinical trials by notifying registry participants about trials for which they may be eligible. ALS RESEARCH PROGRAM AT THE DEPARTMENT OF DEFENSE (ALSRP): The Association also successfully advocated for Congress to support continued funding of the ALSRP, a program designed to find treatments for ALS. Congress provided $7.5 million in FY2015, bringing the total funding to nearly $60 million. ALSRP has produced four potential treatments for ALS. SPEECH GENERATING DEVICES (SGDs): In 2014, the Centers for Medicare and Medicaid Services (CMS) imposed new rules limiting coverage for SGDs. Those changes, which prevent people with ALS from “unlocking” SGDs to access other functions such as email and internet access, have resulted in people losing access to an SGD when they are hospitalized or
admitted to hospice and have resulted in denials of coverage for eye tracking technology. The Association helped secure the support of 200 Members of Congress who sent a joint letter to CMS opposing the changes. CMS subsequently rescinded one of the rule changes and initiated the process to revise its coverage policy. The Association also helped lead a coalition of key stakeholder organizations that joined together to fight the SGD coverage changes and recommend new SGD coverage policy. In January 2015, The Association endorsed the Steve Gleason Act, which would help preserve access to SGDs. The Act was signed into law July 2015. MODERNIZING OUR DRUG AND DIAGNOSTICS EVALUATION AND REGULATORY NETWORK (MODDERN) CURES ACT: The Association worked with Congress to enact several provisions of the legislation that would speed patient access to new diagnostic tests. Significant Congressional support was also generated for the remaining provisions of the MODDERN Cures Act, which would provide new and increased opportunities to develop a treatment for ALS. Nearly 100 Members of the House of Representatives cosponsored the legislation. A companion bill was introduced in the Senate in 2014.
The ALS Association welcomed nearly 1,000 advocates and more than 100 people living with ALS to our National ALS Advocacy Day and Public Policy Conference this year. Passionate advocates held more than 500 meetings with Representatives and Senators, reaching 93 percent of the entire Congress. Advocates are essential to move the needle on regulatory and legislative priorities that benefit people living with ALS and ensure continued funding for ALS research.
Recognizing an important anniversary in the history of ALS In July, just days before the ALS Ice Bucket Challenge soaked the world, The ALS Association recognized the 75th anniversary of Lou Gehrig’s “Luckiest Man” speech. At the time, the baseball great’s goodbye to his fans and teammates was a game changer for creating awareness of ALS – it was one of the first times ALS was recognized on such a public stage. The Association developed a series of public service announcements (PSAs) to pay tribute to Gehrig and raise further awareness of ALS. These ads ran in Time Magazine,CarandDriver, and SportsIllustrated, to name a few.
Walking to generate support for the fight against ALS More than 175 Walk to Defeat ALS® events were hosted by ALS Association chapters last year, raising $32.3 million for the fight against ALS. This figure represents a 37 percent increase over the previous year’s revenue. $215 million has been raised since the inception of the Walk in 2000.
Youth fundraiser Gavin Mitsdarfer walks for his dad
Gavin Mitsdarfer lost his father to ALS in June 2015. His determination to support the search for new therapies united his Enola, Penn., community, including children and adults alike, to stand behind The ALS Association Greater Philadelphia Chapter. Twice recognized as the top youth fundraiser at his local Walk to Defeat ALS®, Gavin spent tireless afternoons knocking on doors selling sandwiches and pretzels, inspiring his friends to follow his lead by selling their artwork and homemade wares. Gavin’s wheels never stop churning and his energy is contagious. He constantly presents his mother with new ideas to challenge ALS, from directing a musical cast entirely of his peers to inviting the town over for a barbecue. An unstoppable force, Gavin’s courage in the face of adversity is proof that individuals can make a tremendous difference in the fight against this disease.
A special thank you to our National Partners who share our Mission and Vision: • Quantum • Numotion • Permobil • Phi Delta Theta • BAYADA Home Health Care • Cytokinetics
The ALS Association Board of Trustees
LAWRENCE R. BARNETT
Chairman Emeritus (deceased)
WILLIAM THOET Association Chair Senior Vice President
ANDREW T. BROPHY Association Trustee
MARTIN HERBERT Association Trustee
PHYLLIS R. BROURMAN, ESQ.
THOMAS D. KETTLER Association Trustee
Brophy Properties Washington, District of Columbia
Booz Allen Hamilton Herndon, Virginia
LAWRENCE R. BARNETT, ESQ Association Vice Chair
CHRIS BRUSSALIS Association Trustee
Gipson, Hoffman, & Pancione Los Angeles, California
WARREN NELSON Association Treasurer JEM Restaurant Group Palm Harbor, Florida
DOUG BUTCHER Association Secretary
Vice President Industrial Properties CBRE/Louisville Louisville, Kentucky
MILLIE ARNOLD Association Trustee Retired Educator Jackson, Ohio
ANDREA PAULS BACKMAN Association Trustee
Managing Director, Institutional Real Estate Mesirow Financial Chicago, Illinois
Beverly Hills, California
President & CEO The Hill Group Pittsburgh, Pennsylvania
DON CASEY Association Trustee San Diego, California
NANCY FRATES Association Trustee Beverly, Massachusetts
SUE GORMAN Association Trustee
Sue Gorman Interior Designs Charlotte, North Carolina
TED HARADA Association Trustee McDonough, Georgia
MicroPact Herndon, Virginia
Retired Vice President Bank of Montreal Pewaukee, Wisconsin
CHRISTI L. KOLARCIK, PH.D. Association Trustee
Research Associate & Program Director University of Pittsburgh School of Medicine Pittsburgh, Pennsylvania
JOHN P. KRAVE Association Trustee
Senior Counsel Kaiser Foundation Hospitals Pasadena, California
LOU LIBBY, M.D. Association Trustee Physician Chair
The Providence ALS Center Portland, Oregon
KIM ANN MINK, P.H.D. Association Trustee
Global General Manager, Elastomers Dow Chemical Midland, Michigan
STUART OBERMANN Association Trustee
President/CEO Community Foundation of Huntsville/Madison County Huntsville, Alabama
ELLYN C. PHILLIPS Association Trustee
Chapter President The ALS Association Greater Philadelphia Chapter Ambler, Pennsylvania
DR. JUDITH A. PRATT Association Trustee
Dentist McManus and Pratt East Greenwich, Rhode Island
WILLIAM SOFFEL Association Trustee
President Vacation Properties Realty Chautauqua, New York
ALLAN J. TOBIN, PH.D. Association Trustee CHDI Foundation Los Angeles, California