Vermont City Marathon Fundraiser
On May 27, 2018, Praveen Bahadduri will be running the Vermont City Marathon to raise awareness for Ataxia and fundraising for National Ataxia Foundation (NAF). He will be running the marathon in honor of my friend’s son Neil, who is diagnosed with Ataxia, specifically spinocerebellar ataxia type 3 (SCA3). SCA3 is a condition characterized by progressive problems with movement, affecting coordination and balance. The prevalence of SCA3 is unknown. This condition is thought to be the most common type of spinocerebellar ataxia; however, all types of spinocerebellar ataxia are relatively rare. Other names for this disorder are Azorean ataxia or Azorean disease or Machado-Joseph disease or SCA3. There is no treatment currently available for this disorder. Treatment is for symptoms only.
Neil is 13 year old and it is very disheartening to see a physically active boy is now wheelchair bound and having difficulties playing with Legos, his favorite activity. I have been working in the rare disease research area for a while now with many rare disease projects that are currently work in progress for me but NOT THIS RARE DISEASE. There are several clinical trials in progress around the world and my sincere hope is that a treatment is found quickly. It is frustrating to see someone you know is suffering from this rare disease. Praveen has come across stories from many rare disease community partners and their everyday struggle. He is raising awareness about SCA3 and funds for NAF, who is supporting the Ataxia community in every possible way sponsoring some clinical trials.
NAF is a non-profit organization and NAF’s tax ID number is 41-0832903.