Hi everyone,
My name is Andrea, and I am somewhat of a newcomer to the HD community. I first heard of Huntington's Disease when I started working on a research team, at the University of Iowa Hospital, that looks at the structure and function of the brain in kids who are at risk for Huntington's Disease (HD).
A little information on Huntington's:
Huntington's Disease is a autosomal dominant disorder that is passed down through families causing nerve cells in certain areas of the brain to degenerate or waste away. HD is caused by a genetic defect that causes a part of the DNA, the CAG repeat, to occur many more times than is normal. The normal CAG repeat length is between 10-29, if the repetition length reaches 36 the person will develop HD during their lifespan. The range of 30-34 is an intermediate range. If a parent has HD, there is a 50% chance that their child will also inherit the disease.
Normally symptoms do not become present until a person is 40 or 50, however; depending on the length of the CAG repeat a person may start to show symptoms earlier or later in life. Once symptoms become present it is normally a 10-15 year degeneration of motor, cognitive, and behavioral abilities that ultimately result in death.
However, this is not just an adult disease. An early onset form of HD, called Juvenile Huntington's Disease (JHD) accounts for a small portion of those affected. JHD is caused by abnormally high CAG repeats, the longer the repeat the sooner the disease will manifest itself. These children start to develop symptoms before the age of 20, and in very rare cases when the CAG repeat is exceptionally long could develop symptoms within the first few year of life.
At this time there is no treatment and there is no cure.
I went to the national HDSA convention in Las Vegas this summer, which also happened to be my first HD event. The convention was a life changing experience, and I met many AMAZING families who were extremely inspirational in their fight against this devastating disease! Despite everything that many of these families are going through and dealing with they remained positive, motivated, and hopeful. Their motivation and positivity was contagious, and since attending the conference I would like to become more involved in helping the families affected as well as helping to find a cure.
What I'm doing:
I love to run! Besides helping with the KidHD research study I thought that I could help raise money through this other passion of mine, Running.
I am running the Chicago half-marathon on Sept. 9th, 2012 and joined the HDSA team which is fundraising money to aid in research for HD.
Please help in any way you can, whether that is through a donation, prayers, or just some support. Your support is not only appreciated by me, but also by every family affected.
Thank You!
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