NAF has launched a petition on Change.org calling on the FDA to prioritize treatment options for rare diseases with urgent unmet needs, including Spinocerebellar Ataxia (SCA).
SIGN THE PETITION
NAF has launched a petition on Change.org calling on the FDA to prioritize treatment options for rare diseases with urgent unmet needs, including Spinocerebellar Ataxia (SCA).
SIGN THE PETITION
It has been even longer that SCA has plagued and devastated those affected by the disease, as well as their families, with symptoms like loss of voluntary motor skills, loss of balance, frequent falling, impaired coordination of arms and legs, and premature death in some cases.
There are still no FDA-approved treatments available for SCA. Despite a nonexistent treatment landscape, the SCA community continues to hope.
Sign our petition to urge the FDA to consider treatment options for rare diseases with unmet needs, including SCA.
Give hope to the SCA and rare disease community by encouraging the FDA to consider safe and effective treatment options.
Raise awareness of SCA to shine a light on its impact, to drive more research, and to spark greater investment, because rare does not mean invisible.
Secure access to treatment for those currently fighting the battle that SCA yields, and for future generations.
SCA3 claimed my father-in-law at the young age of 53, a mere six months after my wife and I exchanged vows. He missed out on so much: meeting his grandchildren, seeing his youngest graduate from high school, and dancing with his daughter on her wedding day. It’s 2025, and a cure or even a truly effective treatment for SCA remains elusive.
– John
Inspired by the determination of so many people living with SCA who remain persistent in finding a way to overcome the emotional and physical challenges of the disease.
As a woman who struggles with Spinocerebellar Ataxia 35 (SCA35), I am speaking not just for myself but for my entire family — a family marked by multigenerational suffering, medical uncertainty, and a profound lack of provider awareness.
– Juanita
Get involved. Share the petition and spread the message. Download a social media graphic below and share it across your social media platforms. Use one of our captions or create your own. Make sure to use the hashtag #LetsFindAWay!
Join me in supporting the @AtaxiaFoundation’s “Let’s Find A Way” campaign to raise awareness of Spinocerebellar Ataxia (SCA) and encourage the FDA to consider safe and effective treatment options for rare diseases by signing this petition: https://www.change.org/p/urging-fda-to-consider-treatment-options-for-rare-diseases-with-unmet-needs-including-sca. Visit ataxia.org/letsfindaway to learn more about the campaign. #LetsFindAWay
Rare does not mean invisible. Join me and the @AtaxiaFoundation in encouraging the FDA to consider safe and effective treatment options for Spinocerebellar Ataxia (SCA) and rare diseases by signing this petition: https://www.change.org/p/urging-fda-to-consider-treatment-options-for-rare-diseases-with-unmet-needs-including-sca. #LetsFindAWay
#LetsFindAWay to give hope to the SCA and rare disease community. Join me in signing the @AtaxiaFoundation’s petition encouraging the FDA to consider safe and effective treatment options: https://www.change.org/p/urging-fda-to-consider-treatment-options-for-rare-diseases-with-unmet-needs-including-sca.
I’ve joined the #LetsFindAWay campaign, and you can too. Visit https://www.change.org/p/urging-fda-to-consider-treatment-options-for-rare-diseases-with-unmet-needs-including-sca to sign the petition urging the FDA to consider safe and effective treatment options for Spinocerebellar Ataxia (SCA) and rare diseases with unmet needs.
Find other members of the “Let’s Find A Way” community by searching the hashtag #LetsFindAWay on social media.
Sca6 has been crippling members of my family for 4 generations. In my immediate family alone my paternal grandfather, father, 3 brothers and myself have had this terrible condition. We need research, treatment modalities, and medications now.
– Rosena
I am a neurologist who cares for people with Ataxia. I strongly urge for more support to study and make available treatments for Ataxia conditions, including Spinocerebellar Ataxia. It is a MAJOR unmet need and has a significant impact on the functional status and quality of life of my patients and their loved ones.
– Deepal
