O.J. Brigance, Steve Gleason, Hill Meetings Among Highlights of 2013 Public Policy Conference
The ALS Association’s 2013 National ALS Advocacy Day and Public Policy Conference, held in Washington, DC May 8-11, brought together advocates from across the country and from throughout the ALS community for the empowering three day event. It was an event that included over 100 people with ALS, representatives of nearly every major ALS organization, as well as keynote speeches by two of the most well-known ALS Advocates: former NFL players O.J. Brigance and Steve Gleason who are living with ALS, but who are not letting ALS slow them down!
The disease also did not slow down the nearly 1,000 advocates who made the trip to Capitol Hill and held nearly 500 meetings with Members of Congress and their staff, urging them to join the fight against ALS by advancing policies to bring a treatment for the disease from the bench to the bedside as soon as possible.
From the bench to the bedside was the theme of this year’s conference and it was reflected throughout the conference program, from the educational sessions about ALS research and the Food and Drug Administration to the priority issues advocates pushed in their Congressional meetings. Below are highlights of this year’s Conference, one of the most successful and well attended conferences to date.
Thank you to everyone who participated in this year’s conference in person and online. You are making a difference!
Government ALS Research: Making a Difference
The 2013 Conference began with the latest updates on the National ALS Registry and the ALS Research Program (ALSRP) at the Department of Defense. Dr. Kevin Horton of the Agency for Toxic Substances and Disease Registry (ATSDR), which manages the Registry, shared with attendees and those viewing live online that new risk factor modules would be added to the registry this summer, providing people with ALS more opportunities to contribute information about their disease that may help find the cause of ALS and a treatment for it. Among the modules to go online are ones that enable people to provide more detailed information about their exposure to toxic substances, their occupational history and where they have lived. Importantly, Dr. Horton highlighted a new survey that will allow people with ALS to enter their own theories for what they think may have caused their ALS. Dr. Horton also announced that the registry program has begun to fund multiple ALS research projects, including ones examining ALS risk factors as well as the burden of ALS, its financial impact on families, the cost of care, caregiver burden and access to care among others.
Col. Melissa Forsythe, who manages the ALSRP, announced that the program has produced three potential new treatments for ALS, which are at the early stages of development. Col. Forsythe also shared news about promising research that has been funded by the program, including research that may establish a new class of combination therapies to treat ALS as well as a study that may result in patients being treated with astrocytes formed by their own skin cells. Click here to view the presentation on our YouTube channel.
Brigance and Gleason Urge Advocates to Tackle ALS
While news from the ALS Registry and the ALSRP provided the ALS community with hope that a treatment can be found, perhaps the most inspirational moments of the conference’s first day came from the two keynote speakers at the evening’s Rally Dinner. The dinner was appropriately themed “Tackle ALS” as former NFL players O.J. Brigance and Steve Gleason shared their stories of faith, strength and courage. Brigance made the trip to Washington from Baltimore to join advocates in person while Gleason who was unable to attend in person, Skyped into the conference and urged advocates to continue the fight, “No white flags!”
A number of awards also were presented during the evening program to recognize the extraordinary efforts of advocates to share the ALS story with Congress and to make a difference throughout the year. Advocacy Achievement awards were presented to the Kennedy family from the Northern New England Chapter in Maine and to Ted Harada from the Georgia Chapter. Harada, who is living with ALS, leads his Chapter’s public policy program and not only embraces public policy as a means to advance the search for a treatment, but also encourages others to do the same and become ALS Advocates. Accepting the award for the Kennedy family was Ernesta Kennedy who lost her husband Josh in 2012 while he was still serving in the U.S. Army. The Kennedy’s were instrumental in building support for ALS issues among the Maine Congressional delegation so it was appropriate that Representative Chellie Pingree from Maine’s first Congressional District was on stage to present the award to Ernesta and her three young sons.
Congresswoman Pingree also was honored as the recipient of the Jacob K. Javits Public Service Award for her leadership on ALS issues including championing the Dear Colleague letter that helped lead to a nearly 20% increase in funding for the ALSRP.
Actress Kate Linder, star of the number one rated daytime television drama The Young and the Restless, and her husband Ron were recognized with a plaque of appreciation for all of the work they have done to advance the fight against ALS across the country since Kate’s late brother in-law Scott was diagnosed with ALS in 2004. In addition to their regular participation in the Public Policy conference, Kate has served as one of The Association’s celebrity spokespersons and has testified in support of ALS issues in the Senate, while Ron helped to secure a significant bequest for ALS research.
Finally, the Rally Dinner concluded with the presentation of the ALS Association Lifetime Achievement Award to Dick Essey, who founded the Greater Bay Area Chapter (now part of the Golden West Chapter) served on The ALS Association Board of Trustees and who has been a driving force in the fight against ALS for the past 20 years both though his personal financial commitment and his leadership and drive to expand and accelerate ALS research.
A video of the Rally Dinner is available on our YouTube channel here: http://bit.ly/15jogyn.
Making ALS A Priority on Capitol Hill
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 nearly 1,000 ALS advocates did as they flooded the halls of Congress and held nearly 500 meetings with Members of Congress and their staff.
Advocates urged Congress to support two top priorities: $10 million to continue funding for the National ALS Registry and $10 million to continue the ALS Research Program (ALSRP) at the Department of Defense. If enacted, total funding for the programs combined will reach nearly $100 million! However, in order to do so, we must overcome several significant challenges, including partisanship, limited government resources and the across the board spending cuts that are part of “sequestration.” Yet, judging by the feedback reported from the meetings, we have a good chance to succeed. That chance is not simply because advocates made good policy arguments for why these two vital research programs should be funded. Rather, it’s because they told their personal stories about how ALS has impacted their lives. They made the disease personal for Members of Congress. They made a difference!
Advocate of the Year
In addition to the awards that were handed out during the Rally Dinner, The Association also presented the Rasmussen Advocate of the Year Award and recognized several ALS Association Chapters for their outstanding efforts to advance ALS public policy throughout the year. This year’s Rasmussen Advocate of the Year was Dr. Richard Bedlack, Director of the Duke University ALS Clinic. Dr. Bedlack’s tireless efforts to encourage and recruit new advocates and to personally participate in public policy activities in Washington, DC, North Carolina and across the country have brought new supporters to our cause and have advanced public policy initiatives immeasurably, whether they be the National ALS Registry, the ALSRP or vital issues related to veterans and Medicare.
While Dr. Bedlack was recognized for his individual efforts, the following ALS Association Chapters were recognized for making public policy a priority for the staff and volunteers of the Chapter throughout the year:
- Rocky Mountain Chapter, which serves Colorado and Wyoming.
Click here to view the Advocate of the Year presentation and presentation of the Chapter awards on our YouTube channel.
ALS Research, Drug Development & the FDA
The conference included several informative sessions focused on ALS research and drug development. The sessions covered different aspects of ALS research, educating attendees about the breadth of research underway and about the drug development and approval process. However, prior to the beginning of the first session, Senator Lisa Murkowski (R-AK), whose family has been touched by ALS, addressed the conference via video and discussed the great promise of ALS research, giving hope and encouragement to all in attendance.
- The first research session was led by Dr. Lucie Bruijn, The ALS Association’s Chief Scientist who spoke about The Association’s TREAT ALS program, how it works, what projects it supports and how it is designed not only to improve our understanding of ALS, but also to speed the development of a treatment. A video of the session, including Senator Murkowski’s remarks and the award presentations, is available here: http://bit.ly/11pEWjw.
- A second session focused on the hot topic of the Food and Drug Administration (FDA). The session featured two speakers, Dr. Richard Bedlack, Director of the Duke University ALS Clinic and Dr. David Banks from the FDA. In his presentation, Dr. Bedlack noted that the challenges with ALS drug development were not due to the FDA, but to the nature of ALS and to the limitations in our understanding of the disease. Importantly, Dr. Bedlack educated people with ALS and their families about how they can help advance ALS drug development, including through participation in clinical trials and by engaging with the FDA, serving on various advisory committees that ensure the Agency hears the concerns and opinions of people with ALS as it reviews new treatments for the disease. Dr. Banks provided an excellent overview of the FDA, how it works, the nature of the drug development and approval process and the FDA’s role in that process. Dr. Banks also praised the ALS community’s willingness to speak out and actively engage the Agency and pointed to the recent FDA ALS public hearing as one example of the effectiveness of the ALS community. A video of the session is available here: http://bit.ly/11zBKI0.
- The third research session focused on ALS clinical trials and was led by Dr. Merit Cudkowicz from Massachusetts General Hospital. One of the world’s leaders in ALS care and research, Dr. Cudkowicz discussed how clinical trials work, the landscape of ongoing ALS trials and noted that we are in one of the most promising eras in the history of ALS research and drug development. In addition, she discussed some of the challenges with clinical trials and trial design and enrollment, how people can enroll in trials and how the research community’s knowledge of ALS has evolved and brought new opportunities to discover treatments for the disease. A video of the session is available here: http://bit.ly/15aDmXu
The conference featured four educational breakout sessions, including ones on human genomics, veterans benefits and financial planning that educated attendees about these important issues. In addition, Dr. Richard Bedlack led a session discussing the “Myths & Facts” of ALS that focused on alternative and off-label treatments, including what patients should consider before investigating these options. He also shared information about ALS Untangled, an initiative led by Dr. Bedlack and researchers around the world to investigate alternative treatments and assess their validity, effectiveness and safety. A video of Dr. Bedlack’s session is available here: http://bit.ly/13Zemms
Virtual Advocacy Day & Public Policy Conference
Nearly every conference session was streamed live online to enable those around the world to participate even if they could not make the trip to Washington. Videos of conference sessions are available on our YouTube channel at http://bit.ly/113cbJx. Moreover, The Association held a virtual Advocacy Day that provided people with the opportunity to urge Congress to join our fight. Just as nearly 1,000 ALS advocates descended on Capitol Hill, Members of Congress received hundreds of emails from ALS advocates back home in the districts that echoed the concerns of those advocates participating in the meetings. And once again the Association actively shared news from the conference and day on the Hill via Facebook and Twitter.
Save the Date!!
The 2013 National ALS Advocacy Day and Public Policy Conference was among the most successful and empowering conferences ever held. From the opening Rally Dinner with O.J. Brigance and Steve Gleason and the meetings on Capitol Hill, to the educational research and care services sessions, this year’s conference not only empowered people with ALS, but left them with great promise that we are closer than ever before to bringing a treatment for ALS from the bench to the bedside. The ALS Association would like to thank everyone who participated in the conference in person and online. Your efforts are making a difference every single day!
Mark your calendars to attend the 2014 National ALS Advocacy Day and Public Policy Conference, which will be held at the JW Marriott Hotel in Washington, DC May 7-9, 2014.