Catholic Law student Lauren Sormani (2L) has a progressive neurological disease called Spinocerebellar Ataxia or SCA for short. It is considered a "rare disease" meaning there are less than 150,000 people in the US that have it. There is currently no cure or treatment.
Last year she approached The National Ataxia Foundation with a new awareness strategy which included her starting an Advocacy Board. The goal of the Board is to essentially lobby local, state, and federal legislatures to raise awareness for SCA, rare diseases, disability rights, NIH funding, etc. and having the states formally recognize an Ataxia Awareness Day, 9/25, by resolution. Eventually the board will be training patients to be able to do this themselves.
Lauren's first "trial run" with this was to get a D.C. resolution.
Read the rest of the story on the law school’s website.