Hope for HD

People draw attention to and raise money for different causes in many ways: Dump ice water on your head. Wear pink football cleats. Walk a 5k. My friend Courtney is taking it a bit further. 100 miles, to be exact.

She is running the Pine Creek Challenge 100 mile endurance race in northern Pennsylvania next month. Yes, you read that correctly. 100 miles. Running. And I am honored to have the opportunity to be one of her pacers!

Why is she running? It’s not for a medal or a t-shirt or even bragging rights. She doesn’t want any of those things badly enough to endure 30 hours for them. But what she will run for two days and through the night for is her family.

Have you heard of Huntington’s Disease? I hadn’t either until about a year ago. HD is a nasty, fatal hereditary brain disorder. Because it’s genetic, sadly, many people Courtney loves are suffering from it. Everyone has the HD gene. But it is those individuals who inherit the expansion of the gene who will develop HD and perhaps pass it on to each of their children. Each child of a parent with HD has a 50% chance of having it, too. Many family members are told not to have children in order not to spread the gene; how sad is that to be driven by such fear? Symptoms usually appear between the ages of 30 to 50, which is way too young! The worst news of all is there is no cure.

But there is hope! There is promising new research, and Courtney is raising funds to support Dr. Juan Sanchez-Ramos at the University of South Florida (USF). He is exclusively working on a treatment for HD! He is very hopeful they will have a treatment ready for clinical trials within the next 2 years. Courtney’s family, and many just like hers, need this.

Courtney’s grandma passed away from HD, and it is now the scary reality the majority of her large family is currently battling or living at risk of having it. One of the family members she laces up for every day is her Aunt Toni. Courtney said, “My Aunt Toni is a beautiful mother and aunt for as long as I can remember. She loved camping, had a beautiful singing voice, and shared the same red hair as me!” Toni started showing symptoms first in her early 40s and tested positive for HD in 2004. At age 59, she is courageously battling HD in the same nursing home as her sister Dawn who is 58.

Why not join us in racing for a cure?! You can make a tax-deductible donation to USF (big or small it all helps!)! All money goes directly, and exclusively to a cure for HD! Be sure to put Courtney Shipman’s name in the “in honor of” box so that she can send a thank you too!

You can also help raise awareness by wearing blue “Strength is Something You Choose” shirts or sweatshirts, which we’ll be sporting on race weekend: HD Shirt Fundraiser. Act quickly though, orders have to be in by Friday, August 22! Thank you.

The Faces of HD

Dawn before she was symptomatic.

Dawn before she was symptomatic.

Courtney with her Aunt Dawn in the nursing home.

Courtney with her Aunt Dawn in the nursing home.

Courtney with her Aunt Toni.

Courtney with her Aunt Toni.

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