The ALS Association

ALS Ice Bucket Challenge Progress

2014 Advocacy Conference Builds Support on Capitol Hill; Breaks Attendance Records

When The ALS Association convened the first annual National ALS Advocacy Day over 15 years ago, a few hundred advocates made the trip to Washington, DC to meet with Members of Congress.  During this year’s conference, held May 7-9, more than 1,000 participated, including over 130 people with ALS, both conference records!  Most of those attending were participating for the first time and, like those who have participated in the past, they made a difference on Capitol Hill, putting a face on the disease and building support for our cause in the halls of Congress. 

Advocates held over 500 meetings with Members of Congress and their staff!  Those meetings educated Congressional offices about the disease and built support for policies that not only would advance the search for the cause and treatment of ALS, but also ensure that those with ALS have access to the care and technology they need to continue to live their lives as they fight the disease. 

Advocacy Day 2014In addition to participating in Advocacy Day on the Hill, conference attendees learned the latest news about government ALS research programs such as the ALS Research Program (ALSRP) at the Department of Defense and the National ALS Registry, which expects to release its first data set later in June, 2014.  Attendees also learned about The Association’s TREAT ALS research program and about innovative clinical trials during research sessions that included Dr. Merit Cudkowicz, representatives from Cytokinetics and The Association’s Chief Scientist, Dr. Lucie Bruijn. 

During the conference luncheon on May 9, The Association recognized a number of individuals for their outstanding advocacy efforts and presented the Rasmussen Advocate of the Year Award.  The luncheon also featured a guest speaker, Jan Scheuermann, who is totally paralyzed, but who is participating in groundbreaking research that enables her to control a robotic arm through the use of brain-computer interface technology.  And finally, conference participants enjoyed a the first ever ALSA Expo, which provided them with the opportunity to visit and speak one-on-one with ALS researchers, including scientists from the NIH, as well as with experts on veterans benefits, financial planning, and assistive technology among others.

By all accounts, the 2014 conference was a tremendous success!  Additional details about the conference are below.  You also can view and download photographs taken during the conference, here: (password: kap).  Please note that photos will be available for a limited time, until September 1, 2014.  Videos of conference sessions also are available for viewing on our YouTube channel,

Thank you to everyone who participated in the 2014 conference in person and online. You are making a difference!

Government ALS Research

Video of the Government ALS Research Session is available here:

Dr. Nicholas Maragakis

The 2014 conference began with presentations about the ALS Research Program (ALSRP) at the Department of Defense and the National ALS Registry.  Dr. Nicholas Maragakis from Johns Hopkins University provided an update about his research, funded by the ALSRP, that is examining the use of induced pluripotent stem cells (iPSC) as a treatment for ALS.  Dr. Maragakis also shared news about other current research and clinical trials examining the use of stems cells in ALS. 

Dr. Kevin Horton of the Agency for Toxic Substances and Disease Registry (ATSDR), which manages the National ALS Registry, shared with attendees the latest news about the Registry including that ATSDR plans to publish the Registry’s first data set in June 2014 through the CDC’s publication, the Morbidity and Mortality Weekly Report (MMWR).  The data set is expected to include information about the incidence and prevalence of ALS and demographic information such as impact of the disease by age, race and gender.  While Dr. Horton announced the upcoming data release he also shared other exciting news including:

  • Three new risk factor surveys were added to the registry in May, including lifetime residential history, lifetime occupational history and pesticide use. An additional five surveys are anticipated to be added to the registry by the end of 2014.
  • ATSDR has sent more than 14,000 emails to people enrolled in the registry to notify them about research studies for which they may be eligible to participate.
  • The registry program has funded five ALS research projects that utilize registry data to investigate causes of ALS. Additional information can be found here:

Dr. Horton also shared results from the 11 state and metropolitan area ALS surveillance studies that were conducted across the country as well as an update on efforts to add a biorepository to the registry that would link samples such as blood, skin, brain and spinal cord with environmental risk factors.  

Making a Difference on Capitol Hill!

Rep. Rodney Frelinghuysen (R-NJ) meets with advocates from the Greater New York Chapter

The most important part of the three-day conference is the day on Capitol Hill when advocates meet with their elected officials, share the ALS story and urge Congress to support the fight against the disease.  And that’s exactly what more than 1,000 ALS advocates did as they flooded the halls of Congress and held over 500 meetings with Members of Congress and their staff.  In addition to educating Congress about ALS, the meetings focused on advancing four priority issues:

  • Eliminating new Medicare regulations that limit coverage for speech generating devices (SGDs);
  • Enacting the MODDERN Cures Act;
  • Appropriating $10 million to continue funding for the ALSRP; and
  • Appropriating $10 million to continue funding for the National ALS Registry
Sen. Lisa Murkowski (R-AK) speaks with Evergreen Chapter Executive Director Becky Moore in the Capitol Building

Judging by the feedback reported from the meetings and by the response and action taken by Members of Congress, the meetings had a significant impact.  For example, more than 200 Members of Congress said they would help us ensure access to SGDs!  And we increased cosponsors of the MODDERN Cures Act by nearly 30%!  

While Advocacy Day on the Hill produced results on the four issues discussed in the meetings, during the conference’s “Prep for the Hill” session held the previous day, The Association’s Public Policy Department emphasized the need for the ALS community to advocate through the year, including locally not just one day in Washington, DC.  Importantly, the Department also shared that The Association works on a wide range of nearly 50 different issues, from FDA regulations to funding for NIH and coverage for therapy services, in addition to the four priorities that were the subject of the Advocacy Day meetings. 

ALS Research and Clinical Trials

The conference included several presentations to update the ALS community about The Association’s TREAT ALS program as well as the latest ALS clinical trials.  Brief summaries of those sessions are below as are links to videos of the presentations.

TREAT ALS:  Video available here:

  • The Association’s Chief Scientist, Dr. Lucie Bruijn, shared that The Association currently is funding 98 active ALS research projects for a total investment of nearly $19 million.  Projects include ones focused on therapy development, identifying biomarkers, and stem cell research.  Dr. Bruijn also shared about the significant work underway through partnerships with the pharmaceutical industry, highlighted some of the companies focused on ALS and discussed the innovative approaches for ALS drug development, such as stem cell and gene therapy.  
Dr. Lucie Bruijn (L) and Dr. Merit Cudkowicz

ALS Clinical Trials:  Video available here:

  • Dr. Merit Cudkowicz from Massachusetts General Hospital and the cofounder of the Northeast ALS Consortium (NEALS) discussed how the NEALS network, which includes over 100 sites in the United States, is working to lower the barriers that have delayed and prevented the development of treatments for ALS.  She also highlighted more than 30 potential treatments that are in development for ALS, discussed in detail clinical trials underway, including those conducted by Neuralstem and Brainstorm, and also shared information about how people with ALS can learn more about and enroll in clinical trials.
  • Dr. Jeremy Shefner provided attendees with an update on the results of Cytokinetics' Phase II clinical trial of Tirasemtiv.  The presentation included discussion of the trial design and enrollment as well as the goals of the trial.  Dr. Shefner noted that while the trial did not meet its primary endpoint of slowing the progression of ALS, it is the only large ALS study to show significant improvements in breathing and strength.   He also discussed the next steps in the development of the drug and indicated that further development will depend on the extent to which tolerability of the drug can be improved.   

Advocates of the Year

From L to R, ALS Association President and CEO Jane Gilbert, Advocate of the Year Karen Carlsen and ALS Association Chairman of the Board Bill Thoet

During the conference, The ALS Association presented the Rasmussen Advocate of the Year Award and also recognized several ALS Association Chapter staff and volunteers for their outstanding efforts to advance ALS public policy throughout the year. This year’s Rasmussen Advocates of the Year were Karen Carlsen from Oklahoma and Ken McGunagle from the Rhode Island Chapter. 

Karen Carlsen’s efforts to advance the fight against ALS have been truly remarkable and an inspiration.  She traveled to visit every single member of her Congressional delegation, not just in Washington, but in their districts back in her home state of Oklahoma. She has promoted the National ALS Registry throughout the state, provided assistance and encouragement to people with ALS and their families, and recruited more and more people to play an active role in public policy and advocacy efforts. And she has done all of this while fighting ALS and without an ALS Association chapter in her state. 

Ken has played an active role in public policy and ALS advocacy since 1991 when he lost his father to the disease.  He helped to establish the first ALS multidisciplinary clinic in Rhode Island, secured The Association’s first legislative grant ever received by an Association Chapter from a state legislature, and has played key roles in advancing both the National ALS Registry and the MODDERN Cures Act. 

While Ken and Karen received the Advocate of the Year Award, The Association also recognized several others for their tireless efforts to advance the cause throughout the year.   They include:

Outstanding Advocacy Efforts:

  • Lisa Bruening – Northern Ohio Chapter
  • John Hax – Connecticut Chapter
  • Diana Wunning – St. Louis Regional Chapter

Certificates of Appreciation:

  • Greater New York Chapter (Outstanding Efforts in Federal Advocacy)
  • Greater Chicago Chapter (Outstanding Efforts in Federal Advocacy)
  • Golden West Chapter (Outstanding Efforts to Raise Awareness of ALS)
  • Greater Sacramento Chapter (Outstanding Efforts to Raise Awareness of ALS)
  • Kentucky Chapter (National ALS Registry Strikeout ALS Program with Minor League Baseball)
  • Upstate New York Chapter (National ALS Registry Strikeout ALS Program with Minor League Baseball)

Groundbreaking Technology

Jan Scheuermann and Michael Sullivan, a person with ALS from the Western Pennsylvania Chapter
On the final day of the conference, The Association hosted a special guest speaker, Jan Scheuermann, who, at the age of 36 developed an autoimmune disorder that left her a quadriplegic, paralyzed from the neck down.  Jan spoke to conference attendees about breakthrough technology she has been testing that enables her to control a human-like robotic arm simply by using her thoughts.  This brain-computer interface technology was developed by the Defense Advanced Research Projects Agency (DARPA) at the Department of Defense and has been featured on “60 Minutes.”   Jan’s story resonated throughout the audience and reminded all in attendance that advances in research and technology can make the impossible possible.  Click here to view video of Jan using this remarkable technology:


Left: NIH's Dr. Bryan Traynor speaks with advocates. Right: Officials with the CDC share information about the National ALS Registry

The 2014 conference featured an exciting new program, called the ALSA Expo, which provided attendees with new opportunities to interact with each other and learn about a wide range of different ALS topics and technologies.  Much like a traditional trade show, the Expo included a research pavilion where attendees could speak one-on-one with scientists from NIH, The Association’s Chief Scientist Lucie Bruijn, and ALS researchers supported by The Association’s Milton Safenowitz Post-Doctoral Fellowship.  In fact, one of the research fellows was so moved by her interaction with patients and families during the Expo that she said it was “an experience I will never forget and [it] has provided renewed motivation for my research projects.” 

The Expo also featured exhibits where attendees could obtain information about veterans’ benefits, financial planning, familial ALS, resources for children, power wheelchairs, speech generating devices, and much, much more.  However, best of all attendees could relax and share their experiences, stories and hopes with fellow advocates.   

Save the date

Mark your calendars to attend the 2015 National ALS Advocacy Day and Public Policy Conference, which will be held at the JW Marriott Hotel in Washington, DC, May 10-12, 2015

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