Health

Ataxia Research Fund launches: aims to support Spinocerebellar Ataxia Research

Ataxia-Research-Fund

The Fund strongly supports those working toward cures for major diseases, but we feel those living with, and dying from, SCA also deserve hope for a cure.

As I’ve discussed before, I’ve been diagnosed with Spinocerebellar Ataxia (SCA), a degenerative, often fatal genetic disease associated with parkinsonism, chorea, cognitive impairment, nystagmus, cerebellar atrophy and seizures, as well as a host of other symptoms. An estimated 150,000 people in the United States have SCA and researchers have identified at least 38 strains of the condition. There is no known treatment or cure.

Yet.

Yet is why I’m posting. Along with some colleagues – including fellow S&R staffer Frank Balsinger – I have launched the Ataxia Research Fund, a nonprofit foundation to benefit Ataxia research in the United States. Few things are more motivating than an incurable condition, I’ve learned, and the generous (and unsolicited) willingness of people to contribute their time, expertise and resources is as humbling as it is compelling.

Ataxia research is still in its infancy, and public awareness of the condition (and the impact on its victims) is minimal. Promising studies are being conducted in some of our best research centers (including UCLA, Johns Hopkins, the University of Colorado and the University of Florida), and what these research professionals have, in abundance, is passion and genius.

What they lack, as is usually the case with rare diseases, is sufficient financial support. Last year the nation’s largest Ataxia nonprofit distributed barely more than a million dollars to researchers. While these funds are welcome, they pale in comparison to, for example, the roughly $5 billion spent on cancer research in the US each year.

SCA doesn’t affect as many people as cancer, but its impact is every bit as significant, and Ataxia is far more widespread than some well-known conditions. For example, Cystic Fibrosis affects approximately a fifth as many Americans as SCA, but it attracts $30 million per year in research funding.

The Fund strongly supports those working toward cures for major diseases, but we feel those living with, and dying from, SCA also deserve hope for a cure.

I invite you to visit the site, where you’ll find more information on Ataxia and the Fund. Additionally, we can be found on social media at:

 

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