September 25, 2020, marks the first anniversary of Ataxia Awareness Day in Washington, D.C. The 2019 resolution passed largely through the hard work and initiative of third-year Catholic Law student Lauren Sormani.
In an effort to bring more awareness, disability rights, and funding to Spinocerebellar Ataxia (SCA) and other rare diseases, Sormani, who has SCA herself, partnered with Catholic Law alumnus and former ANC Commissioner for Ward 7, Bob Coomber ’07 to draft the resolution and with the help of Commissioner Gray of Ward 7 introduce it to the D.C. Council Committee on Health.
Sormani shared, “Resolutions such as the Ataxia Awareness Day Resolution are important because they keep the rare disease voice present and heard in legislation. Roughly 30 million Americans live with a rare disease, which is more than all cancers, Alzheimer’s, and HIV combined. Yet, rare diseases are grossly underrepresented in policy, legislation, and funding.
Raising awareness about ataxia is also important to me as a law student. A recent ABA demographic study found that 0.5% of lawyers have a disability. When I looked at diversity programs at law firms, I was shocked to find that none of them included disability as a category that qualifies for consideration. By raising the profile of ataxia specifically, and rare disease more generally, I hope programs like these grow to include the voice of lawyers living with these conditions."
Just a year since the passing of the D.C. resolution, Sormani announced, "the U.S. Senate introduced a bipartisan resolution declaring September 25th, 2020, National Ataxia Awareness Day. We anticipate unanimous passage within days."