September 25, 2019
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. She talked to Bob Coomber, Catholic Law class of 2007, as he was a former ANC Commissioner of Ward 7. Lauren then drafted the resolution, and Coomber and Sormani worked with Commissioner Gray of Ward 7, who introduced this resolution as Chair of the D.C. Council Committee on Health. It was passed by the full Council, and now D.C., "formally recognizes National Ataxia Awareness Day as part of its efforts to raise awareness for Ataxia and those living with it in the District of Columbia and to support research developments towards a cure." — Sec. 2 of the Resolution, which the Council added.
This month Sormani will also have her first organized "Hill Day" with 14 advocates meeting with 12 Senator's offices. She is also starting on state resolutions in Maryland and Virginia, and she drafted an Ataxia Awareness Senate Resolution, which will be formally announced in greater detail later this year and will be introduced by our two primary sponsors in the Senate in early 2020.
Lauren had this to say about her efforts, "Getting the DC resolution passed and working to get sponsors for our bill in the Senate has been extremely time consuming, and at times frustrating, but it is all worth it in the end if we raise enough awareness to help find a cure to better the lives of Ataxia patients across the US."
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. She talked to Bob Coomber, Catholic Law class of 2007, as he was a former ANC Commissioner of Ward 7. Lauren then drafted the resolution, and Coomber and Sormani worked with Commissioner Gray of Ward 7, who introduced this resolution as Chair of the D.C. Council Committee on Health. It was passed by the full Council, and now D.C., "formally recognizes National Ataxia Awareness Day as part of its efforts to raise awareness for Ataxia and those living with it in the District of Columbia and to support research developments towards a cure." — Sec. 2 of the Resolution, which the Council added.
This month Sormani will also have her first organized "Hill Day" with 14 advocates meeting with 12 Senator's offices. She is also starting on state resolutions in Maryland and Virginia, and she drafted an Ataxia Awareness Senate Resolution, which will be formally announced in greater detail later this year and will be introduced by our two primary sponsors in the Senate in early 2020.
Lauren had this to say about her efforts, "Getting the DC resolution passed and working to get sponsors for our bill in the Senate has been extremely time consuming, and at times frustrating, but it is all worth it in the end if we raise enough awareness to help find a cure to better the lives of Ataxia patients across the US."
