Cytokinetics’ Communications Grants Awarded to 2 ALS Groups
NEALS, ALS Association chapter among 5 chosen for outreach efforts
Cytokinetics has awarded $20,000 grants to five patient advocacy organizations, including two serving the amyotrophic lateral sclerosis (ALS) community, under its fifth annual Communications Grant Program.
Each grant is intended to support the nonprofit’s outreach, engagement, and awareness efforts, allowing the organizations to broaden their work in underserved and other communities, launch educational programs, and help patients with access to disease conferences.
Grant recipients were the Boston, Massachusetts-based Northeast Amyotrophic Lateral Sclerosis Consortium, or NEALS, and the ALS Association Greater Philadelphia Chapter, and three organizations focused on people living with heart failure and hypertrophic cardiomyopathy.
Groups recognized for ‘meaningfully’ addressing patient and caregiver needs
“We are continuously impressed by the quality of proposals we receive, and this year’s recipients were particularly impactful, reflecting the unique needs of the patient communities they serve,” Mary Pomerantz, Cytokinetics’ senior director of patient advocacy and engagement, said in a company press release.
“As more in-person gatherings resume this year, along with digital connections, we are pleased to support these valuable communications initiatives to bring enhanced awareness to and meaningfully address the unmet needs of patients living with heart failure, HCM, and ALS and their caregivers,” she added.
NEALS, an academic research consortium, works to swiftly translate scientific discoveries into clinical testing and, potentially, into new therapies for those with ALS and motor neuron disease.
It will use the funds to develop and put in place a pilot program called the ALS Clinical Research Communication and Outreach Tour, building upon existing education and awareness efforts with in-person visits to underserved ALS communities across the U.S.
The ALS Association Greater Philadelphia Chapter plans to put its award toward more and better educational communications, via new professional videos, targeted mailings, and website upgrades.
The chapter, which serves about 1,200 ALS patients and their families in eastern Pennsylvania, Delaware, and south and central New Jersey, wants to make patients and caregivers more aware of the family assistance it offers, and of ALS in general to support earlier diagnosis and treatment initiation.
Other grant recipients are the HeartBrothers Foundation, Mended Hearts, and the WomenHeart: the National Coalition for Women with Heart Disease.
Cytokinetics’ program focuses on advocacy organizations working in ALS, hypertrophic cardiomyopathy, and heart failure. A call for 2024’s grant applicants will be announced this fall.
The biopharmaceutical company is developing reldesemtiv to slow muscle function decline in people with ALS.
A ongoing Phase 3 clinical trial, COURAGE-ALS (NCT04944784), is evaluating oral reldesemtiv’s safety and efficacy, against a placebo, over 24 weeks in up to 555 adults, ages 18 to 80, recently diagnosed with ALS. It is currently recruiting eligible patients at sites in North America, Europe, and Australia, and it is expected to conclude in March 2024.
Those who complete COURAGE will be able to enter its open-label extension study called COURAGE OLE (NCT05442775), where all will be given the experimental therapy for about one year. They also could have the option of enrolling in a compassionate use program, allowing them to continue treatment pending reldesemtiv’s potential regulatory approval.
About the Author
