Registration is now open for our annual advocacy conference, which will be held June 14 -16 from 3:00-4:30 p.m. ET. Due to visitor restrictions at the U.S. Capitol Complex, the event will be virtual again this year.
Every year, hundreds of people with ALS, their caregivers, friends and family come together to discuss progress in the fight against ALS and how we advance ALS research, accelerate the drug development process and make it possible for people with ALS to live their lives as they want by engaging policymakers to support the ALS community.
During the conference this year, attendees will learn about and engage in advocacy actions aimed at securing new and increased federal funds for research, extending telehealth coverage beyond the pandemic and updating FDA’s accelerated approval process for new drugs. The ALS Association is asking Congress to fully fund the ACT for ALS Act at $100 million this year with $75 million for expanded access and $25 million for grants at FDA for ALS and other neurological diseases.
In addition, the Association is asking for $60 million for Department of Defense ALS research, $10 million for the Centers for Disease Control National ALS Registry and Biorepository, and at least $135 million at the National Institutes of Health for ALS research.
In addition to ALS research funding, we are asking Congress to pass an extension of telehealth provisions which will expire in December this year. Lastly, we will encourage Congress to strengthen the FDA’s accelerated approval program to quicken the process of approving new therapies for people living with ALS.
Register today at ALSAdvocacyConf.org.
Keynote speakers this year include:
Finding New Treatments and Cures.
- Dr. Sabrina Paganoni - Co-Director of the Neurological Research Institute at the Massachusetts General Hospital, physician scientist at the Healey & AMG Center for ALS, and Associate Professor at Harvard Medical School. Her research focuses on clinical trials and therapy development for ALS. She has served as principal investigator of several ALS clinical trials and has been using novel trial designs, novel endpoints and digital technology tools to innovate the way investigational products are tested in ALS.
Optimizing Current Treatments and Care.
- Dr. Richard Bedlack - Professor of Neurology at Duke and Director of the Duke ALS Clinic. He has won awards for teaching and patient care, including best Neurology teacher at Duke, Health Care Hero, Strength Hope, and Caring Award, America’s Best Doctor, the American Academy of Neurology Patient Advocate of the Year, and the Rasmussen ALS Patient Advocate of the Year
Preventing or Delaying the Harms of ALS.
- Dr. Michael Benatar - Professor of Neurology at the University of Miami and Chief of the Neuromuscular division. He holds multiple titles including the Walter Bradley Chair in ALS Research, vice chair for Clinical and Translational Research, and executive director of the ALS center. He Benatar leads an active clinical and translational research program focused on biomarker and therapy development for ALS and MG.
- Dr. Terry Heiman-Patterson - Professor, Neurology, Lewis Katz School of Medicine at Temple University and Director, Temple MDA/ALS Center of Hope