ALS Groups Given $20K Grants by Cytokinetics to Support Outreach Work

Cytokinetics awarded two amyotrophic lateral sclerosis (ALS) patient advocacy organizations grants worth $20,000, in recognition of their efforts to support their disease communities through communications, awareness, and outreach.

The grants, part of the Cytokinetics’ annual Communications Fellowship Grant program, aid projects that reach underserved populations, provide assistive technologies to those in need, foster community connections, and encourage education.

In addition to ALS, grants were given to three groups serving heart failure and hypertrophic cardiomyopathy patients and their families.

“The challenges of COVID-19 have completely transformed the care delivery model among nonprofit organizations and the need for increased education, awareness and connectivity is greater than ever,” Diane Weiser, Cytokinetics’ senior vice president of corporate communications and investor relations, said in a press release.

The ALS Association Oregon and SW Washington Chapter, representing all of Oregon and six counties of southwest Washington, plans to use its award to fund a campaign promoting ALS awareness and improving outreach into remote and rural communities in Oregon.

The chapter will educate patients and caregivers through town halls, live education series, and caregiver bootcamps, all to be held virtually. Some money will also go toward providing assistive technology services to ALS patients to help ensure their access to virtual education and awareness activities.

The ALS Association Massachusetts Chapter, this year’s other grantee, will devote its award to building out its Augmentative & Alternative Communication and Assistive Technology Program, which provides free communication device loans and access to technologies to individuals with this disease.

The grant will allow this chapter to expand the program’s inventory and outreach throughout New England, in collaboration with nearby ALS Association chapters.

The Massachusetts chapter typically provides a number of no-cost services to ALS families. These include support groups, home visits, insurance counseling, referrals to community resources, education, and support.

Projects supported by those serving the heart failure and hypertrophic cardiomyopathy communities include efforts to improve women’s cardiac health, a medically supervised summer camp for children with congenital heart defects, and publicizing a patient-centric heart failure video among advocacy, scientific, policy, and public health organizations.

Past awardees include the ALS Association Golden West Chapter, which won a fellowship grant in the program’s first year.

Fellowship recipients must present Cytokinetics with an outcomes report measuring their programs’ impact at the end of each funding period.

Cytokinetics will issue a call for 2022 Fellowship Program proposals this autumn.