Passionate ALS Advocacy Fuels the Fight for a Cure

In recognition of ALS Awareness Month – with a theme of “Raise Your Voice” – we’re sharing new stories nearly every day in May. They’re stories about people living with the disease and their caregivers, the volunteers and health care providers who help make the lives of people with ALS better, the generous fundraisers and the participants in Walk to Defeat ALS and Team Challenge ALS events, and the researchers fighting for a cure. They are all part of our ALS community, helping us move toward a world without ALS. This story highlights our National ALS Advocacy Conference – which embodies the true spirit of Raise Your Voice.

We’d like to extend a huge thank you to the more than 570 ALS Advocates who participated in our 2018 National ALS Advocacy Conference in Washington, D.C., this week. Nearly every state in the country was represented and nearly half of the participants were attending for the first time.

Most importantly, more than 100 people living with ALS made the trip to Washington to tell their stories and ask their members of Congress to fund research and do away with the five-month wait for Social Security Disability Insurance.

“Attending the ALS Advocacy Conference was one of the most rewarding things I have ever done,” said Karen Dunn, a first-time participant from Pennsylvania who was attending on behalf of her friend Melissa Cordek, a 37-year-old mother diagnosed with ALS two years ago. “I encourage everyone to become an ALS Advocate.”

On Tuesday, participants spent the day on Capitol Hill, where more than 350 congressional meetings were held. These photos from that powerful and inspiring day – a very small portion of the ones taken – speak for themselves. (We’ll share more photos soon.)

 

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Prior to Tuesday’s day on the Hill, participants spent time learning about the latest in ALS research, care services, and advocacy. On Sunday, Dr. Clifton Gooch with the University of South Florida ALS Clinic, a Certified Center of Excellence providing comprehensive multidisciplinary care to ALS patients in Florida as well as conducting ALS research projects, spoke on the importance of advocacy and funding for ALS multidisciplinary care.

On Monday morning, Calaneet Balas, the Association’s president and CEO, welcomed participants with opening remarks. Then, members of the Association’s Advocacy team reviewed progress on the 2018 legislative asks and congressional staff from the offices of Senators Sheldon Whitehouse (D-RI), Bill Nelson (D-FL), and Dr. Bill Cassidy (R-LA) provided important updates.

Pat Quinn, co-founder of the ALS Ice Bucket Challenge, participated in a panel about Project Revoice during lunch on Monday. Other panelists were Brian Frederick, executive vice president of communications for the Association, and Alisa Brownlee, a certified Assistive Technology Professional (ATP) and clinical manager for assistive technology services for The ALS Association Greater Philadelphia Chapter. (Alisa also provides support to chapters across the Association.) Lance Slaughter, executive vice president for chapter relations and governance for the Association, moderated the panel.

On Monday afternoon, research updates were provided by Dr. Lucie Bruijn, MBA, the Association’s chief scientist; Dr. Nazem Atassi, associate director of the Neurological Clinical Research Institute (NCRI) at Massachusetts General Hospital (MGH); and Dr. John E. Landers, professor of Neurology at the University of Massachusetts Medical School and the research leader of Project MinE USA .

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Also on Monday, children and grandchildren of people with ALS participated in a special training session just for them, developed and led by Dr. Melinda Kavanaugh, a professor at the University of Wisconsin-Milwaukee. The young people – ages 8-18 – learned about providing basic care, using durable medical equipment, the latest speech, communication, and nutrition information related to ALS, and how to use various types of assistive technology.

Generous support from numerous companies helped make the 2018 National ALS Advocacy Conference possible. Biohaven Pharmaceuticals served as the premier sponsor. Other sponsors included: Cytokinetics, Functional Formularies, Genentech, Halyard Health, Mitsubishi Tanabe Pharma Corporation, Permobil USA, Quantum Rehab, Soleo Health, TimeSpring, and Tobii Dynavox.

Several portions of the conference were live streamed and can be found at these links:

Please help us continue the momentum built at this week’s National ALS Advocacy Conference. In honor of ALS Awareness Month, Raise Your Voice to elevate the fight against ALS for all people living with the disease.

 Update your Facebook profile with the ALS Awareness frame. Contact your representatives in Congress. Recruit your friends to like our Facebook page or follow us on Twitter. Promote a fundraiser. Host a fundraiser. Register for a Walk to Defeat ALS or a Team Challenge ALS event.

Raise Your Voice however you can. Together, we will be heard.

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