2016 ALS Clinical Research Learning Institute
The 6th Annual ALS Clinical Research Learning Institute (CRLI), sponsored by The ALS Association, was held October 7 – 8, 2016 in Clearwater Beach, Florida. There were 37 people in attendance, including 11 patient-caregiver pairs, 4 returning research ambassadors and 7 faculty members.
The CRLI is a two-day program founded by Drs. Richard Bedlack, Duke ALS Clinic and Merit Cudkowicz, Massachusetts General Hospital that is dedicated to educating attendees on clinical research and therapy development and empowering this group to be advocates for ALS clinical research. Becoming an ALS Research Ambassador provides individuals with ALS, and their families, a new way to join the fight to find a cure for ALS.
NEALS faculty presented insightful lectures and facilitated participant discussion around several key topics integral to ALS research, including the research pipeline, enrollment barriers, clinical trial design, statistics, tips for critiquing a clinical research paper, informed consent and ethical considerations.
Among the faculty were:
Nazem Atassi, MD, MMSc, Massachusetts General Hospital
Richard Bedlack, MD, PhD, Duke University
Merit Cudkowicz, MD, MSc, Massachusetts General Hospital
Terry Heiman-Patterson, MD, Drexel University
Eric Macklin, PhD, Massachusetts General Hospital
Jeremy Shefner, MD, PhD, Barrow Neurological Institute
Guest presenters included Patrick Wildman, from The ALS Association, who provided a comprehensive overview on the ALS Regulatory Pathway and 2013 ALS Research Ambassador and caregiver Kathryn Delaney Thomas, who for the 2nd year in a row led a discussion on advocacy opportunities and tips for addressing barriers.
Inspired by her late husband’s love for the outdoors, 2015 Research Ambassador Deb Paust arranged for all-terrain Action Trackchairs to be made available for PALS who wanted to enjoy the beach during their stay in Clearwater.
Graduated ambassadors are invited to become editors of the ALS Research Ambassadors Facebook page, where they can keep fellow ambassadors and the ALS research community at large up-to-date on their ongoing advocacy efforts. NEALS looks forward to reading about our ambassadors’ next steps on Facebook and we encourage all of you to follow their journeys by liking the page.
On behalf of the NEALS organization, we would like to send a personal, heartfelt thank you to each of the patient-caregiver pairs who attended the 2016 CRLI. Because of the efforts they have made and will continue to make, the field of ALS advocacy has been moved forward. As one of Dr. Bedlack’s patients with ALS once said, “nothing about us should be done without us." Thank you!
Information about the 7th Annual CRLI and application deadlines will be posted on the NEALS website in the spring of 2017.