On February 21st we hosted our first HOPE AND HELP SYMPOSIUM in Orlando, FL. It was a full day of programs and speakers for our patients, caregivers, and supporters of people with ALS. There were sessions on the national ALS Registry, the importance of Public Policy Advocacy, Caring for the Caregiver, and Mindfulness and Meaning in ALS. There were also 2 "Ask the Experts" panels covering topics on symptom management and resources to live with ALS and clinic care. The day also included a Town Hall meeting, an awards luncheon, and a vendor hall showcasing some of the latest technologies for ALS patients.
Attendees heard from our keynote speaker, The ALS Association Chief Scientist, Lucie Bruijn, Ph.D., as she delivered a thorough presentation about the history and current status of ALS research opportunities as a result of the Ice Bucket Challenge funds. We were also fortunate to hear directly from Congressman Gus Bilirakis, US Representative of Florida's 12th Congressional District. A strong proponent of stimulating research in order to find cures and treatments for rare diseases like ALS, he spoke about his work on the Healthcare Committee and their pending legislation, 21st Century Cures Act.
Here are just a few of the comments we received from our attendees:
"The entire day was engaging and informative. The individual business booths were great to have access to! We love ALSA Florida Chapter! Thank you for caring and improving my quality of life." - Robert Mirabelli, ALS patient
"It was wonderful and hopeful. Thank you all so much." - John Collins, ALS patient
"I am very glad we attended. Lucie Bruijn Ph.D. was inspiring and insightful. Thank you for building hope!" - Lisa Knight, ALS patient
Here are a few of the presentations delivered during the event: