CREATING A WORLD WITHOUT ALS
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Buckets of Ice Heat Up ALS Research By Richard Robinson
our major research initiatives made possible by Ice Bucket Challenge funding are poised to accelerate the search for the causes and treatments for ALS. “Advances in the research field have brought us to an exciting and very promising point in our quest to understand ALS,” said ALS Association Chief Scientist Lucie Bruijn, Ph.D., M.B.A. “The unprecedented new funding will now allow us to push forward to make the most of those advances.”
Volume 11 Winter 2015 alsa.org
Each of the new initiatives is a collaborative effort among top ALS researchers, joining together to increase the depth and breadth of their research. Major research areas include developing a full understanding of the genes that contribute to ALS; using stem cells to model the disease; developing biomarkers for tracking disease progression and response to therapy; developing new treatments, including antisense therapy against the most common genetic forms of ALS; and strengthening the infrastructure for central data and biosample storage and dissemination. Recently, scientists have begun to discover that genes account for a much larger fraction of ALS cases than previously suspected. This has given new urgency to the search for genes that cause the disease or influence age at onset or rate of progression. Two initiatives, led by the New York Genome Center (www.nygenome.org) and Project MinE (www.projectmine.com), will hasten the discovery of such genes through sequencing the genome, or the entire set of DNA, in thousands of individuals with ALS. Discovery of new genes that influence ALS risk and progression provides new targets for therapy development. Therapy development is the focus of the Neurocollaborative. In partnership with Biogen and ISIS Pharmaceuticals, this initiative will pursue development of antisense therapy for the C9orf 72 and SOD1 genes, the two most common genetic causes of ALS. Antisense has emerged as among the most promising ways to prevent disease-causing genes from being expressed; therefore, stopping the disease at its earliest cellular stages. Successful antisense
‘The unprecedented new funding will now allow us to push forward...’ –Lucie Bruijn, Ph.D., M.B.A., ALS Association Chief Scientist
therapy may also provide important clues to developing treatments for other forms of ALS. The Neurocollaborative will also be hosting a central facility for creation of clinical-grade induced pluripotent stem (iPS) cells, which will be openly shared with the ALS research community. (iPS cells are a key research tool and potential source of therapeutic cells in ALS. Derived from skin cells, they can be converted into unlimited numbers of neurons for study and engineered to carry protective factors as a possible treatment strategy.) A key need for speeding ALS clinical trials is development of biomarkers that can track progression and response to treatment. Meeting that need is one goal of ALS Accelerated Therapeutics (ALS ACT), a novel academic-industry partnership that will develop neuroimaging tools for use in clinical trials and provide funding support for trials that incorporate biomarkers in the design of the trial. In addition, ALS ACT will strengthen ongoing collaborative efforts in support of clinical trials, including NeuroBANK, a central repository for clinical research data in ALS, and the NEALS (Northeast ALS Consortium) Biorepository. “Each of these four new initiatives has the potential to make major strides in developing new treatments,” Dr. Bruijn said. “But just as importantly, the synergies we can expect to see among them— sharing data, rapidly converting new genetic discoveries to disease models with iPS cells and drawing on centralized databanks to better classify different types of ALS—will further accelerate research in each of these areas. We are deeply grateful for the new opportunities provided by the Ice Bucket Challenge, and fully expect that these new initiatives, along with critical ongoing studies elsewhere, will open new avenues for rapid therapy development.”
Challenge and Hope Message from The ALS Association President and CEO Barbara J. Newhouse When I joined The ALS Association in June, the organization already had robust programs in research for treatments and a cure, care services for people and families living with ALS, and public policy. After only two months on the job, the Ice Bucket Challenge took the country by storm and changed the fight against ALS forever. By the end of the summer, The ALS Association and its chapters had raised more than $115 million, thanks to the most successful disease awareness activity of all time.
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Following the media frenzy, we quickly set about consulting with patient groups, President and CEO chapters and our Board of Trustees to Barbara J. Newhouse strategize on the most effective way to translate this success into supporting the mission of The Association. In October, we announced an investment of $21.7 million toward several new projects in ALS research, care services and public policy to expedite the search for better treatments and a cure. We would not have been able to invest in these projects or sustain them in the future had it not been for the generous support of millions of Americans. The Ice Bucket Challenge has also enabled us to build closer alliances with other ALS organizations to collaborate in the search for ALS therapies. We were also helped by Major League Baseball’s commitment to ALS research during the year that marked the 75th anniversary of Lou Gehrig’s “Luckiest Man” speech. For the second consecutive year, The ALS Association received the coveted “four-star” rating from Charity Navigator, one of the leading independent charity rating groups. In addition to the November activities surrounding National Family Caregivers Month and Veterans Day, we organized and held a Clinical Care Conference with nearly 400 participants from across the country. The Association also participated in the Society of Neuroscience international conference, followed in December by the International Symposium on ALS/MND. The Ice Bucket Challenge and the subsequent activities initiated by The Association have significantly changed the landscape in the quest to create a world without ALS. Additional opportunities for partnerships and collaborations position our Association to lead the way into a new era of hope for truly effective treatments and ultimately a cure for ALS.
Building Government Support to Fight ALS Thanks to the efforts of people with ALS and ALS advocates across the country, The ALS Association realized significant successes in Washington, D.C., in 2014. They included: National ALS Registry: Congress provided $8 million for the registry in 2015 (nearly a 30 percent increase) to fund: research projects designed to find causes of ALS; the potential addition of a biorepository; reports examining risk factors, ALS incidence, prevalence and demographic data; and efforts to increase clinical trials and speed enrollment by notifying eligible registry participants about trials. ALS Research Program at the Department of Defense: Congress provided $7.5 million for 2015, bringing total funding to nearly $60 million for the program, which is specifically designed to find ALS treatments. Speech generating devices (SGDs): In 2014, Medicare imposed new rules limiting coverage for SGDs. The Association secured the support of 200 Members of Congress who sent a joint letter opposing the changes. Medicare subsequently rescinded one of the rule changes. The Association helped lead a coalition of key
stakeholder organizations that joined together to fight the SGD coverage changes and recommend new SGD coverage policy. Modernizing Our Drug and Diagnostics Evaluation and Regulatory Network (MODDERN) Cures Act: Congress enacted several provisions of the bill to speed patient access to new diagnostic tests. Significant Congressional support was generated for the remaining MODDERN provisions, which would provide new and increased opportunities to develop an ALS treatment. Nearly 100 Members of the House of Representatives now have cosponsored the legislation. Importantly, a companion bill was introduced in the Senate in December. The bicameral bipartisan support provides critical momentum as The Association works to enact the MODDERN Cures Act in 2015. VA Housing Grants: The Veterans Administration implemented new regulations that automatically make veterans with ALS eligible for up to $68,000 in grants to adapt their homes, speeding up the grant process by up to 12 months. Continued on page 8
FEATURES PAGE
Buckets of Ice Heat Up ALS Research 1 Challenge and Hope––Message from Barbara J. Newhouse 2 Building Government Support to Fight ALS 2, 8 Getting Creative for a World Without ALS 3 Phi Delta Theta 3 4 Caregivers Need Care Making a Big Splash 4, 5 The ALS Association 2014 Clinical Conference 5 Progress by the Bucketful Infographic 5 Touching the Future––The Legacy Society 6, 7 Make Your ALS Promise 7 2014 Walk to Defeat ALS® Recap 8
Getting Creative
A
FoR a World without ALS
s the Ice Bucket Challenge came and went, an unprecedented number of local, regional and national corporations joined forces with The ALS Association. Some companies got involved on behalf of employee connections to ALS, while other were challenges by peers or other company representatives. These organizations used many fun and exciting approaches to get employees involved.
By Meghan Tallakson
Vineyard and Vines, an American clothing and accessory retailer, hosted an ALS Day at its stores across the nation and helped raise $16,000 in less than three hours. JPMorgan Chase matched employee donations, and the total company and employee donations reached $176,884.
The store managers of Cumberland Farms, a premier convenience store and gasoline retailer with locations throughout the Northeast and Florida, were challenged by one of its national executives to step up to the plate and “do something big” with this––and did they ever. For several weeks during the summer, they donated to The ALS Association 20 cents for each bag of ice sold. The company raised $46,000.
These stories are just a few highlights of the incredible outpouring of support received from corporations that have never before been engaged with The ALS Association’s mission. To all of you––THANK YOU! In addition, ALS Association national partners Permobil, Quantum Rehab, Numotion, Phi Delta Theta and BAYADA, which have been with us over the last few years––THANK YOU––for engaging your employees in new ways around the Ice Bucket Challenge.
Amazon.com posted a “donate now” button for less than 48 hours, which resulted in donations of $45,739 from thousands of people. Live Nation’s CEO, Michael Rapino, challenged his employees around the world to take the Ice Bucket Challenge, and Rapino pledged to
Phi Delta Theta
donate $100 for every video that was submitted. The Association received a check for $146,000.
It’s been a wild and wet year for The Association and corporate America. The Association is grateful to everyone who has helped us move closer to creating a world without ALS.
By Andrew Christy
Phi Delta Theta, Lou Gehrig’s fraternity, has been a model philanthropic partner of The ALS Association for many years. In 2014, that partnership strengthened even further, as the Phi Delta Theta chapters demonstrated their support of The ALS Association by participating in the Ice Bucket Challenge. Members of the fraternity brought the challenge to their campuses to rally their brothers and classmates to stand up in the fight against ALS. Phi Delta continued to demonstrate in support of of Lou Gehrig’s “Theleadership 75th anniversary ALS Association chapter events across the country and helped to push the Walk to Defeat ALS® to new farewell underscores the heights in many cities. The Association is thankful for the fraternity’s outstanding show ofspeech volunteerism, urgency that exists to fund research...” fundraising and public awareness. –Carrie Martin Munk
The ALS Association is proud to have the Phi Delta Theta fraternity working at our side in the fight to putAssociation Chief Communication an end to Lou Gehrig’s Disease. We look forward to another successful year in 2015. Hundreds of Phi Delts volunteered their time this year in order to help our events be as successful as ever.
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MAKING A BIG
SPLASH Caregivers Need Care By Amber Walters Family caregivers are the lifeline to people living with ALS. On top of taking care of their loved one’s personal needs, they assume the crucial but often undervalued role of maintaining the entire household and family structure. With quiet acceptance and determination, caregivers are responsible for such duties as financial management, arranging doctor appointments, housework, emotional support, transportation, childcare and much more. In addition, many caregivers work a full- or part-time job to help put food on the table and a roof over their family’s head. 4
November is National Family Caregiver’s Month (www.alsa.org/news/media/press-releases/caregivers-month-2014. html), a time taken each year to acknowledge and thank the individuals who bravely and selflessly take care of those who need it most. This year’s theme was “Care Comes Home.” For caregivers that need referrals for home healthcare or a respite program for some relief, The ALS Association’s network of chapters is available to help and provide resources. Caregivers can also receive assistance by organizing a Care Connection team, which can be accessed on The Association’s website. Through this program, each family creates a list of potential team members and caregiving tasks that are specific to the needs of the person with ALS and the family. Getting help with everyday tasks, such as making a meal, running an errand or simply spending time with someone with ALS, provides welcome respite for the caregiver. The ALS Association encourages everyone to remember how important it is to take care of the needs of caregivers, not just during November, but throughout the year. The caregivers’ wellbeing ensures that those with ALS are cared for as well.
It was the viral event of summer 2014, involving notable entrepreneurs, celebrities and everyday people with buckets of water. It prompted a surge in ALS awareness globally. The ALS Ice Bucket Challenge allowed millions of people from around the world to become cognizant of ALS, and it raised more than $115 million for The ALS Association. Additionally, it grew the organization’s traditional and social media presence. Last July, three men fighting ALS and their families made the challenge go viral. Pat Quinn, Pete Frates and Anthony Senerchia and their loved ones galvanized their social networks and inspired friends and colleagues to take the challenge. The challenge involves pouring a bucket of ice water on one’s head, nominating others to do the same on video, and then sharing that he or she is taking the challenge to spread ALS awareness. Those nominated had 24 hours to Bill Gates
Ice Bucket Challenge Spurs ALS Awareness, Raises Funds and Media Presence for The ALS Association By Stephanie Dufner
complete the challenge and/or make a donation to the ALS charity of their choice. Nominated individuals continue this process and designate their family and friends to take the challenge. Prominent individuals who willingly drenched themselves include Microsoft co-founder and philanthropist Bill Gates (www.youtube.com/watch?v=XS6ysDFTbLU), “Tonight Show” host and comedian Jimmy Fallon (www.youtube.com/ watch?v=b_kdke345NQ), and Vogue editor Anna Wintour (www.youtube.com/ watch?v=E3ZRpzZ82yc). During the challenge’s zenith, The Association saw a cascade in donations. From late July to midSeptember, the challenge yielded an astounding $115+ million to the organization. More than two million new donors made contributions to The Association in the fight against ALS. “These contributions will enable us to make strides toward achieving our mission,” (www.alsa.org/about-us/ mission.html ) said Barbara Newhouse, The Association’s President and CEO. “We can fund more research, care services programs and public policy endeavors that benefit people and their families living with ALS.” In early October, The Association announced an initial commitment
of more than $21 million (www.alsa.org/news/media/press-releases/ ibc-initial-commitment.html) toward treatments and a cure for ALS. The funding included investments in research with other ALS organizations: ALS ACT, the New York Genome Center, The Neurocollaborative and Project MinE. “Supporting these initiatives gives us more insight into this disease. That will bring us closer to finding treatments and ultimately a cure,” Newhouse added. As part of a longterm strategy, The Association also agreed to triple its spending on ALS research. Aside from the gush of donations to The Association, we saw a swell in social media followers. In early July, The Association’s Facebook page had 35,300 page “Likes.” Two months later, the page’s “Likes” grew close to 333,000. Similarly, our Twitter feed listed nearly 9,000 followers at the start of the challenge; by September, we had 22,000 followers on this site. Traditional media also increased outreach to The Association. Members of The Association’s Board of Trustees and Executive Staff appeared on national cable news stations such as Fox Business Network, Bloomberg Television and CNBC. In addition, during the Continued on page 5
SPLASH
Jimmy Fallon
Continued from page 4
event’s height, The Association received an average of 200 media contacts daily compared to approximately 10 per day prior to the challenge launch. Inquiries arrived from print and electronic news outlets based in the United States and throughout the world. An organization called GOOD Inc. created an animated video to show how the Ice Bucket Challenge spread around the globe, which can be viewed at: www.youtube.com/watch?v=qTEchen97rQ
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uring the first week in November, nearly 400 healthcare professionals gathered in Phoenix, Arizona, to learn about the latest technology and best practice care and support options for people living with ALS. The Association hosted the multi-day professional clinical conference attended by ALS By Cynthia Knoche Association Chapter Care Service staff, Certified Center clinical practitioners and licensed healthcare professionals from more than 42 states and Canada. Conference attendees viewed leading-edge equipment and services available to those diagnosed with ALS. Whether maintaining quality of life through home care nursing services or accessing life-supporting ventilation equipment, attendees were able to discuss the features and benefits of a wide variety of equipment and services with representative clinical specialists during the conference’s Exhibit Experience. Concluding the conference, The ALS Association President and CEO Barbara Newhouse confirmed The Association will continue to support professional clinical education and announced that The Association is hosting the 2015 ALS/MND International Alliance Symposium next December in Orlando, Florida.
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Touching the Future–
Anonymous (6)
Kathy Chrisman
Angelene Adler
Sue Lenke Clark
in loving memory of Sue Harris
Diane Anderson Rita E. Bagot Martha Beachy Beverly Beavers
in loving memory of my husband, James R. Beavers
T
Danny Beverage
he Legacy Society recognizes those special individuals who have included The ALS Association in their long-term charitable plans. This includes gifts through a will or living trust; charitable gift annuity; or beneficiary designation in an IRA, 401K or other account. Gifts of any size are welcome, and you have the option of giving anonymously. You might consider honoring a friend or family member with a special legacy gift.
Mary Blanton
Among the most valued supporters of The ALS Association, members of The Legacy Society have determined that their legacy will be one of hope––hope that treatments and a cure for ALS will be found and that those living with ALS will be inspired to continue to fight this disease with awe-inspiring tenacity, courage and optimism.
Elizabeth Bolton
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Britta Berge
Norman G. Block Bernice Blohm Belinda Boatwright Mrs. David C. Bole
in memory of my husband David, and two of his Bole cousins, and one nephew…all victims of ALS in memory of Andy Bolton
Rogene and Dr. Robert+ Conn Kathleen Cooke Harold Cosel Bob and Sharon Danielson in loving memory of my dad, Richard L. Gibson
Joyce Davison George De Coster Pamela Deckard
in loving memory of my husband, David C. Hill
Barbara C. Deeming James B. Dietrich Claire Drummond James L. and Ann E. Dunn
in memory of our son, Jeffrey Lewis Dunn
Enid Dwyer Barbara Emeigh
Gay Brinkley Miriello
Kim Everhart
Ed Britt
Mary Lou Fenn
Robert Brooks
Linda Fewell
If you would like to learn more about the many ways you can leave a legacy of hope, please contact:
Mady Brown
Mary Ann Fiene
Mary Bucko
Margaret Fox-Warren
David Moses, Director of Planned Giving at (888) 949-2577 x212, dmoses@alsa-national.org, or visit us at www.legacy.vg/alsa/giving.
Jerry E. Byrd
Donna Franklin
Sandra Cantz
Pamela Friedman
We encourage you to let us know if you have included us in your will or financial plan as we would like to say “thank you” and welcome you into our family of Legacy Society members.
Philip and Janet Carlock
Robbie Garritano
Lucille Caron
Nancy L. Golden, M.D.
Laura D. Certano
Kimberly Goslin
We extend a very special welcome to our newest members, listed here.
in memory of my husband, James A. Certano
Norman Green
Joseph P. Gross
in loving memory of my mother, Helen Gross
Marjorie A. Gustin Frances L. Hansen Linda L. Hanson Mr. and Mrs. David M. Heimos Mary Hensley Rebecca Huffer G. Hungerford Emilda Jaccard Joseph Jance Wanda Jennings
Patricia Mallon
Carol R. Resides
Doug and Claudia McClure
Kay Riper
Peter McKown
Arnold Robbins
in memory of my father, John McKown
Carol Miller Judith Jones Moore
in loving memory of my mother, Peggy Jones Bicket, who courageously fought ALS
John G. Morgan
in loving memory of my mother, Shirley Morgan
William C. Morris Rhoda J. Mull
Patricia Rogers Dawn Rossow George and Judy Rowland George M. Shafer Jordan and Jen Sing
in loving memory of my father, Larry Sing
Danielle Smith
in loving memory of my mother, Patricia Smith
Berjuhi Nazarian
Warren and Dorothy Smyth
Ralph and Susan Nicholson
Laurie Speight+
Donald and Joyce Nielsen
Evelyn Spivack
Don and Rachel Novak
Louis R. Stephon, Jr.
Seymour Kraver
Joshua Nyman
Brenda Struck
Raymond Krust
Randy and Karen O’Hare
Harold Thompson
William Jurney Karla M. Kraeszig
in loving memory of my father, Harry E. Kraeszig, gone but not forgotten
Charles Kusek Randy+ and Debi Kyte Bonnie Lajoie Nelson E. LeBarron Mervin LeBlanc Richard and Nancy Ledford in memory of Peggy Marie Rhyne Ledford
in loving memory of our mothers, Dee O’Hare and Diane Stone
M. Eloise Olson Thomas and Joan O’Reilly Vaneda Orth Bonnie and Stuart Pastman Sue Payne
Al Lee and Alexis Halmy
Shontea Price
Tina Ling
Irene I. Reece
Richard Lissy
in memory of my husband, John C. (Bill) Reece
Every effort has been made to ensure the accuracy of this listing. If your name has been inadvertently omitted or listed inaccurately, please accept our apologies and contact our office at (888) 949-2577.
Martin Tivador Tony Topp Nancy Vaughn Susan Waligora Daniel Wardenburg Virginia P. Wentreck Duane Wing Sylvia M. Wolff John and Carolyn Wragge William J. Zeigler Alan Zimmerschied + Deceased
Make Your ALS Promise By Maegan Bracken Leave a lasting legacy in the fight against ALS. Establish your ALS Promise Fund to honor a loved one’s battle against this dreadful disease, and create a virtual platform that commemorates your ALS journey. After we receive your commitment,* we will work with you to build and customize your own tribute web page that can feature a story about your personal connection to the disease, photos of your loved one and family, spoken remembrances and a guestbook for visitors to leave their personal sentiments. To learn more about the ALS Promise Fund, please visit www.alspromise.org or call Maegan Bracken at (202) 465-8807. * Minimum commitment to establish your ALS Promise Fund is $25,000 over five years.
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NATIONAL OFFICE
1275 K Street NW, Suite 250 Washington, DC 20005 alsa.org Dated Material
Thousands of participants walked through red and white arches to begin the Walk to Defeat ALS® this year.
By Andrew Christy
Therapy Caps: Congress to extend the exceptions process that enables people with ALS to exceed imposed spending limits on occupational, physical and speech therapy services.
$30,000,000 $25,000,000
National Institutes of Health: Congress increased NIH funding by more than $150 million and funding for the National Institute of Neurological Disorders and Stroke (NINDS) by more than $17 million.
$20,000,000 $15,000,000 $10,000,000
For more information and to get involved, please visit the Public Policy website at www.alsa.org/advocacy.
$5,000,000
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The ALS Association is thankful to everyone for helping to make the 2014 Walk season so successful. Every walker brings us one step closer to a cure.
Building Government Support Continued from page 2
$35,000,000
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The ALS Association’s premier event is an opportunity for communities across the nation to demonstrate their concern for the urgent need to find the cure for ALS. What began 15 years ago as a grassroots effort to increase awareness has turned into a tremendous event to raise funds in support of The ALS Association’s mission.
2014 Walk Participants Raised More Than $30M
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With the debut of the Ice Bucket Challenge this summer, the Walk to Defeat ALS had its most successful year yet. Whether reinvigorated by the Challenge or new and concerned about our cause, more than 150,000 ALS supporters nationwide participated in chapter Walks this year. It was incredible to feel your support, as Walks across the country broke fundraising and attendance records, and enthusiasm was off the charts. Celebrities and people near and far were not only accepting the Ice Bucket Challenge, but also coming out in droves to show their support, some even participating in multiple Walks.
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2014 Walk to Defeat ALS® Recap