May marks ALS Awareness Month, a grassroots campaign led by the ALS Association to improve understanding of, and raise research money for, amyotrophic lateral sclerosis (ALS). Each May the ALS Association sponsors activities that include National ALS Advocacy Day, leading a delegation of ALS patients, their caregivers, and other advocates to Capitol Hill to urge U.S. legislators to support efforts to develop new treatments and a cure for the disease.
This year’s campaign opened on May 2 with the ALS Association joining with Cytokinetics, Inc., and the ALS community at NASDAQ in New York City.
“We are honored to join Cytokinetics and representatives from our Greater New York and Golden West Chapters at NASDAQ to recognize May as ALS Awareness Month,” Barb Newhouse, president and CEO of The ALS Association, said in a news release. “Advancing potential therapies to treat ALS is key to delivering on our mission. We are thankful that Cytokinetics shares our vision to create a world without ALS.”
The Association is an active supporter of Cytokinetics’ clinical development program for tirasemtiv, a skeletal muscle activator and potential ALS treatment. It partnered with Cytokinetics and the Barrow Neurological Institute at the University of Arizona in June 2015, supporting the collection of plasma samples from ALS patients taking part in Cytokinetics’ VITALITY-ALS (Ventilatory Investigation of Tirasemtiv and Assessment of Longitudinal Indices after Treatment for a Year in ALS) trial. The Phase 3 study is evaluating tirasemtiv against placebo in slow vital capacity (SVC) as well as other skeletal muscle strength measures, and looking to discover ALS biomarkers. The Association also began funding Origent Data Sciences’ work with Cytokinetics to improve clinical trial design.
Upcoming fundraising and awareness-raising events include the Walk to Defeat ALS on May 7 in New York City, and the “Champions for Care and A Cure” day on June 3 in San Francisco. Cytokinetics is a sponsor for both events, and the company’s efforts to advance ALS treatments will be honored at the California event.
“Cytokinetics’ continued support for the ALS community ensures that vital resources are available to everyone who needs them,” said Fred Fisher, MSW, LCSW, president and CEO of the Association’s Golden West Chapter.
A centerpiece of each year’s ALS month activities, the National Advocacy Day and Public Policy Conference, will take place on May 8–10. Hundreds of ALS patients, their families and advocates will come to Washington, D.C., to urge policymakers to increase funding for research into ALS and to advance programs that help patients.
The ALS Association also announced that Quantum Rehab, a designer and builder of rehabilitation devices for people with limited mobility, will serve as the formal sponsor of ALS Awareness Month.