Variety of Advocacy, Fundraising Events Mark ALS Awareness Month

Variety of Advocacy, Fundraising Events Mark ALS Awareness Month
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National Amyotrophic Lateral Sclerosis Awareness Month, recognized in the U.S. each May since 1992, continues to unite patients, family, friends, and advocacy groups around shared goals of raising public awareness and research support.

This year’s efforts continue to recognize and support those living with amyotrophic lateral sclerosis (ALS), which affects about 1 in every 20,000 in Western countries at any given time. Most events will still be online because of COVID-19 restrictions, but some fundraisers will be held outdoors.

This includes the Harley Davidson’s Ride for Life, an in-person event held in Lebanon, Pennsylvania, last weekend. Harley Davidson, a Muscular Dystrophy Association partner, set a goal of raising $500,000 for muscular dystrophy, ALS, and other neuromuscular diseases.

The Muscular Dystrophy Association (MDA) has dubbed May as Movement Month in support of disease research, and will have activities such as firefighter workouts and adaptive yoga. Participants can sign up and pledge their movement activities and create fundraising teams. A 24-hour event on May 22, Make Your Move Day, encourages community members to create their own movement-related fundraisers.

Advocacy efforts continue into June. Major League Baseball will host its inaugural Lou Gehrig Day on June 2, in honor of the Hall of Famer whose career and life were cut short by ALS. 

“Lou Gehrig Day will not only honor Lou’s accomplishments on the field, but will also help millions understand this devastating disease that has claimed far too many of us, including my mother,” said Stephen Piscotty, an Oakland A’s outfielder and co-founder of the ALS Cure Project

Project ALS will also continue its yearly pledge for an hour of silence on May 22. This pledge started with Avery Niedrowski taking a 10-hour vow of silence in 2009 for her grandfather, who died of ALS complications. Money raised will go to the Project ALS Therapeutics Core at Columbia, a partnership between the university and organization to support research into treatments.

“ALS robs people of the ability to talk,” said actor Christine Taylor in a public service video sitting alongside her husband Ben Stiller, who stays silent. “By taking a vow of silence, you can honor those who lose their voice to this horrible disease and raise money for research that seeks to finally silence ALS.”

A Facebook Live webinar covering care and research updates, hosted by the MDA, starts at 3 p.m. EDT on May 6, and featuring Matthew Harms, MD, an associate professor of neurology at Columbia University, and Sabrina Paganoni, MD, PhD, director of the Massachusetts General Hospital Neurological Clinical Research Institute. They will also update the public on the ongoing Healey ALS Platform Trial (NCT04297683), which is testing multiple treatment regimens in ALS patients.

The MDA Engage ALS Symposium, running May 12–13, will host seminars on drug development, ALS care, the role of genetics, cognitive and behavior syndromes, and the ALS Registry, run by the Agency for Toxic Substances and Disease Registry under the Centers for Disease Control and Prevention. It is open to the public, and registration is required.

A central MDA fundraising gala for ALS, Wings Over Wall Street, will air virtually on May 20 starting at 7 p.m., and feature six pre-taped segments on topics such as research, drug development, day-to-day care, and a “mission moment” in honor of Pat Quinn, who was the co-founder of the ALS Ice Bucket Challenge, with Bill Ritter, anchor for ABC Eyewitness News. The related online auction will run until June 2.

Proposed legislation before the U.S. Congress, called ACT for ALS, that would speed development and access to ALS therapies is the webinar on May 24 at 4 p.m. EDT. Registration is required this MDA Advocacy Institute Webinar featuring Paul Melmeyer, an MDA vice president for public policy and advocacy, and others.

“We have much more to do in finding effective treatments and one day, a cure,” Donald S. Wood, PhD, president and CEO of MDA, said in a press release. “The more public support and awareness we can raise through our efforts in collaboration with the entire ALS community, the more progress we will make toward finding that cure.”

The ALS Association is also marking May and spreading awareness through shared stories of those in the community. Sally Dwyer, director of mission and strategy integration for the Mid-America association chapter, who has worked with the organization since 1995, was the first to recount her story. One of Dwyer’s accomplishments was encouraging lawmakers to approve a waiver of the 24-month waiting period for Social Security and Medicare benefits for people with ALS.

“It’s incredible to think that so many people over the past 21 years have benefited directly from the passage of that bill,” Dwyer said in an association blog post.

Additionally, any donations — up to $25,000 — made during this month to the ALS Association will be matched by Philips Respironics.

The ALS Association will also hold its annual National ALS Advocacy Conferencewhich brings together its 39 chapters to share their stories with Congress and advocate for greater support, on June 8–10. This year’s conference will be a virtual event.

The Les Turner ALS Foundation has launched its Take a Breath campaign, asking people to create their own fundraiser, whether it be an athletic undertaking, memorial, or school event. Participants are encouraged to send a 30-second video about their event and why they take a breath here. The foundation is also continuing its Tag Day drives, started in May 1991,  to collect money throughout the community. 

A foundation hourlong webinar, “Take a Breath: Respiratory Support in ALS,” takes place May 20 starting at 8 p.m. Eastern time and 7 p.m. Central time, featuring John M. Coleman, an associate professor of medicine and neurology at the Northwestern University Feinberg School of Medicine.

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