In June of 2011, my father in-law was diagnosed with Huntington's Disease - a rare neurodegenerative genetic disorder that affects those who have it emotionally, mentally and physically. Physical symptoms usually show between ages 35 - 50, but mental and emotional symptoms (depression, anxiety, etc) can occur sooner. Since the disease is caused by an autosomal dominant mutation in one of an person's two copies of the Huntingtin gene, offspring of the affected individual have exactly a 50% chance of inherting the disease.
My father-in law has two daughters - my wife, and her sister.
Since the signature of the disease is a mutation in the Huntingtin gene, genetic testing can be performed to determine if an individual has the mutated gene. If you have the mutated gene, you have the disease. It's just a matter of time before symptoms are visible.
My wife and her sister decided to be tested to determine if they have the mutated gene. My sister-in-law has HD. My wife does not.
During this time, I took up running. When I started, I didn't realize I could actually help my extended family by doing something I ended up loving to do. When I found out that the HDSA had a few spots available to run the NYC Marathon, I was in!
I run for my wife and my kids. I run for my sister-in-law, her husband, and their three kids, I run for my father-in-law and mother-in-law. I run for anyone affected by this ridiculously cruel disease.
I run for the Huntington's Disease Society of America. Their mission is:
- To improve the lives of people with Huntington's Disease and their families.
- To promote and support research and medical efforts to eradicate Huntington's Disease.
- To assist people and families affected by Huntington's Disease to cope with the problems presented by the disease.
- To educate the public and health professionals about Huntington's disease.