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Tom Hamilton is a changemaker in the FA and Rare Disease Communities. He works tirelessly to promote treatment progress. He is also a father and is constantly balancing between protection, and encouragement of his daughter Annie and all those in the FA community. Listen as Tom shares his perspective on parenting, advocating, and working toward a treatment.
Completing tasks is about focus. If we take our eye off the ball, that's when we get off track. Listen as the Dudes talk about how this principle applies in their life.
Participate in Disability Book Week, April 23-29.
Joe Sooch points out that we only have one life to live so we better make the most of it. He has a rare disease called Fibrodysplasia ossificans progressiva (FOP) - a genetic disorder that causes soft tissues to transform permanently into bone.
Joe uses a wheelchair and FOP has limited his physical abilities in many other ways. However he is determined to make the most of the time he's been given.
Find Joe Sooch on YouTube or Instagram.
Listen to Joe interview us on his podcast Two Mics, One Joe Sooch.
Some fears are healthy and they keep us from getting hurt. Some fears are totally legit but they may keep us from enjoying the little things in life. Some fears are a little ridiculous and silly.
Promising treatments for many rare diseases are on the horizon. As they start to become a reality, it's important for us to adjust our expectations of what symptoms could potentially be relieved.
Listen as the dudes discuss their symptoms and show appreciation for friends and family who are deeply committed to traveling this rare disease journey.
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