024 – Rare Disease Parent Perspective with Tom Hamilton

Tom Hamilton spent 25 years on Wall Street and when his daughter was diagnosed with Friedreich’s ataxia (FA), he started using all his knowledge and expertise to fight Rare Disease.  Tom is on the Board of Directors for the Friedreich’s Ataxia Research Alliance (FARA), he is a founding Board Member for Chondrial Therapeutics, he is Executive Producer of The Ataxian, and co-founder of the CureFA Foundation.

It’s understandable that most of what we focus on in this podcast is meant to encourage those with disabilities. However, those with disabilities are not the only ones affected by them. In many ways, the effects of the diagnosis are felt severely by the parents of the patient. It’s important to recognize the support of parents of those with disabilities – and their own hardships.

 

Tom tells us about his journey of discovering his daughter has a rare debilitating disorder when she was nine, and how he felt obligated to use his own abilities to advance research for FA. He admits that he lacks medical or scientific knowledge, and he says that everyone listening may notice that they are lacking in certain areas necessary for research of rare disease. But he encourages everyone to instead focus on your strengths, and use your own talents in the effort to better the lives of people in whatever community is important to you.

2 Comments on “024 – Rare Disease Parent Perspective with Tom Hamilton

  1. Sean and Kyle. You are ROCK stars! Thanks for what you are doing for our FAmily!! Love you! Sending virtual hugs until I see you again.

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