For father’s day, most dads want 2 things: 1) a pat on the back, and 2) to be left alone.
Below are 4 dads in the rare disease community who deserve a pat on the back and a brief mention before we let them get back to being dads.
Friedreich’s ataxia is a rare neuromuscular disorder that afflicted Ron’s child. Ron is co-founder and president of the Friedreich's Ataxia Research Alliance and a NORD Board Member. His experience as a parent, an advocate, and NORD member has provided Ron with a wealth of experience and knowledge that he regularly shares with the community. For more information, visit www.curefa.org.
Dan is the father of a child with Menkes disease (aka kinky hair disease), a rare and devastating disease due to abnormal levels of copper in the body. Dan has used his experience as a film maker to help bring awareness to this condition. For more information, click here.
Jon is the father of a child with tyrosinemia, a rare metabolic condition that will require his son to take daily medicine and stick to a very strict diet for the rest of his life. As the father of an ultra rare condition, Jon took it upon himself to find other families with tyrosinemia to help them get the special foods and medicine needed to survive. For more information, please visitwww.notacares.org.
Jeff is the father of a child with alternating hemiplegia of childhood. With no treatment options available, Jeff founded CureAHC. Using his skills as a salesman, Jeff has brought together AHC families with research centers at Duke University to research treatments for this neurological disorder. For more information, visit cureahc.org.