Two Disabled Dudes Podcast
Posted by twodisableddudes on March 13, 2017

010 -Adaptive Equipment Grants – Ataxian Athlete Initiative

Ataxian Athlete Initiative equipment grant The idea for the Ataxian Athlete Initiative (AAI) adaptive cycling equipment grant program came when Kyle received a grant from the Challenged Athletes Foundation, which he used to purchase a Catrike recumbent trike. That purchase changed his life: while on it, he didn’t feel as physically limited as he felt most times. Realizing how impactful that grant was for him, he created a grant specifically for people with FA, to purchase adaptive cycling equipment, which is often times cost prohibitive for someone with a disability. (more…)
Posted by twodisableddudes on February 27, 2017

009 – Ron Bartek, Co-Founder and President, Friedreich’s Ataxia Research Alliance (FARA)

We are honored to interview Ron Bartek, president and co-founder of the Friedreich’s Ataxia Research Alliance (FARA). Since both of us have Friedreich’s ataxia (FA), this organization and Ron himself are special to us.

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Posted by twodisableddudes on February 22, 2017

008 – Paul Melmeyer, Associate Director of Public Policy, NORD

“Alone we are rare. Together we are strong.” –National Organization for Rare Disorders

In this episode we are joined by Paul Melmeyer, Associate Director of Policy at the National Organization for Rare Disorders (NORD). Among other things, Paul is the main lobbyist of NORD and visits Capitol Hill often, frequently meeting with the FDA, Medicaid, Medicare, and other federal services that impact those affected with rare diseases.

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Posted by twodisableddudes on February 20, 2017

007 – Interview with Max Bronstein of the EveryLife Foundation

 

“We have a big innovation gap in this country when it comes to rare disease therapies. 7,000 diseases and only roughly 300 treatments on the market for those diseases. We have a long way to go and there’s a lot of work that needs to be done if we ever want to get to the point where we have one treatment for all of those diseases or even multiple treatments – and that is what our foundation is set up and designed to do.”

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Posted by twodisableddudes on February 15, 2017

006 – Nicole Boice, CEO Global Genes

 

The knowledge and diagnosis of a rare disease can be a frightening time in anyone’s life. However, through education and through connecting to others, support – and hope – is abundant.

 

“When I started looking at the stats and facts about Rare Disease…that was my catalyst to say, ‘This is the largest disease community on the planet, more than all cancers and AIDS combined, 30 million people here in the US, 350 million people worldwide.’ My big question marks were, ‘Why in the heck isn’t anyone talking about it? Why aren’t we hearing about it in mainstream media? Why aren’t there more resources available for these families?’” – Nicole Boice.

Hope. It's in our Global Genes.

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