Thursday, September 15, 2011

Solving the Mystery of Huntington’s Disease

Huntington’s Disease (HD) is an inherited brain disorder that results in the progressive loss of both mental and physical control. A fact about HD that shocked me is that everyone has the gene. Yes, everyone! But, only those who inherit the expansion of the gene will develop HD. Unfortunately, there is no present effective treatment or cure. Nonetheless, there are ways of raising awareness for this disease!

My good friend, Katie Edwards, invited me to join her team, HDI: Huntington’s Disease Investigators, to walk in the 1st annual Huntington’s Disease Society of America Team Hope Walk in Knoxville, TN.

Walking to cure HD!

We paraded around the park with American flags, in honor of 9/11. The weather was beautiful and we got a great work out!

Katie has been personally affected by HD. Her grandfather and uncle have both developed the gene, and her father is an "at-risk" individual. “Our family has grown closer together in an effort to support them and spend more time with them,” said Katie. She says it is hard to know that they will lose them, but it has given her family hope that other members of her family haven't developed the gene. “We pray everyday for a cure and that HD will end with us.”

My friend, Katie Edwards

Katie was inspired to make an imact in the HD community because God has given her this passion. She recently joined the National Youth Alliance, an HD association for youth affected by the disease, and started The Hunt for the Cure: the Search for a Miracle to fundraise for the HDSA. 

“My plans to improve HD awareness are to continue gaining support for my organization. We plan to attend more Team Hope walks, represent at expos and festivals, and attend the National Huntington's Disease convention. Our goal is to educate the public on the signs of HD and how to respond to knowing that a loved one has the disease while we fundraise for and support the HDSA. Hopefully, this will one day lead to a cure and the last generation with Huntington's Disease.” I could not be more proud of her and honored to be her friend.

HD affects both sexes and all races and ethnic groups around the world. Contact the HDSA Center of Excellence at www.hdsa.org or 1-800-345-HDSA if you or your loved one have these symptoms: personality changes, mood swings, depression, forgetfulness, impaired judgment, unsteady gait, involuntary movements, slurred speech, and difficulty swallowing.


Research worldwide is working to unlock the mystery of HD and find a cure. With people as passionate as Katie and with Team Hope, there is hope for a cure for HD.

Jurnee Carr
Miss Teen International 2011

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