037 – Rare Disease Week On Capitol Hill & The Ataxian

We are excited to bring you the recording of a live panel following the showing of the film The Ataxian, which is the movie both of us are featured in!

You probably know about the movie by now- it focuses on our team’s journey in Race Across America (RAAM), the world’s toughest cycling event, trekking 3,000 miles from CA to MD. This movie serves as a vehicle which introduces viewers to the FA (Friedreich’s Ataxia) community.

 

The documentary screening was the kick-off event for Rare Disease Week on Capitol Hill, a gathering of Americans passionate about the issues facing one in ten Americans, those diagnosed with rare diseases. Each year, the Everylife Foundation arranges a week-long event for participants throughout the country to gather in Washington D.C. and learn about federal legislative issues, meet other advocates and dialogue directly with legislators. This annual event is held around Rare Disease Day, February 28.

 

Rare Disease Week includes an exhibit by artists with rare diseases, a symposium of current efforts and information about rare diseases, a day spent lobbying Congressional representatives, and a documentary-screening of a rare disease. This year, The Ataxian was shown as the featured documentary.

 

This episode is a recording of the panel after the movie screened. It is a mash-up of many contributors in attendance of the screening and Q&A discussion! Along with the Two Dudes, on the panel we had Dr. Angel Martin, FARA Research Program Director, and Tom Hamilton, Executive Producer of the film and a 2DD guest on episode 024. We also hear from Ron Bartek, co-founder and President of FARA, who was featured on episodes 009 & 011.

 

Join us as we dive into the movie and patient advocacy.

 

The film is available on video platforms now. So if you haven’t seen it yet, click your preferred platform here:

iTunes • Amazon • GooglePlay

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.