Through the temporary program, called COVID-19 PPE Package, SMA households can receive shipped supplies of antibacterial wipes, antibacterial hand sanitizer gel, disposable three-ply masks, disposable gloves, a protective face shield, and travel tissue packs. For some, such items may be unaffordable or not easily obtainable.
Go here to request a package, one per household while supplies last. Applicants may be patients or legal guardians of someone with SMA. Questions about the program can be sent by email to [email protected].
So that it can better understand community needs, the organization requires program applicants to answer survey questions about the pandemic’s affect on their family. Specifically, the questions cover COVID-19 diagnosis, symptoms, and hospitalizations; any cancelled or delayed SMA treatments; employment or financial hardships; and access to protective equipment.
“As we continue to quarantine and see a new wave of COVID-19 cases across the country, Cure SMA would like you to know that our work for the spinal muscular atrophy (SMA) community continues,” Cure SMA states in a press release. “We remain vigilant in our monitoring of the pandemic statistics and responding to the needs of the entire SMA community. Your health, safety, and wellbeing are our top priority.”
In its announcement, the nonprofit organization said the program grew from previous survey data as well as feedback from SMA families about difficulties obtaining personal protective equipment. The program is sponsored by Genentech, which with Roche developed and markets Evrysdi (risdiplam).
“We hope the items included in the COVID-19 PPE Package will provide you with some added protection and temporarily ease a bit of the additional financial burden this pandemic has brought on to those who require these supplies while quarantining at home,” the organization stated.
Evidence has shown that people with underlying conditions, including SMA, may be at greater risk of serious illness from COVID-19 infection. Cure SMA also called attention to its Coronavirus (COVID-19) Information Center as a source of updated information and community resources.
SMA, an autosomal recessive neurodegenerative disease, is estimated to affect 1 in every 8,000 to 10,000 people. It’s characterized by progressive muscle weakness.
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