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By Matthew Santamaria (msantamaria@hdsa.org)

On September 8th, HDSA’s Washington State Chapter will be hosting the Seattle Team Hope Walk at Magnuson Park from 10:00 AM – 3:00 PM.

The Team Hope Walk program is HDSA’s signature grassroots fundraising campaign that is designed to provide hope and support for those affected by HD and their families. Since 2007, it has occurred in more than a hundred different cities.

For the 2019 Seattle Team Hope Walk, the chapter has named Roger Carnes as an Ambassador for the event because of the amount of work he does for the HD Community.

Roger was born in Juneau, Alaska and has also lived in Idaho and Oregon. While at the University of Oregon, he met his future wife Robin. They would move to Houston, Texas due to Roger attending Baylor College of Medicine.

The couple then moved to Olympia, Washington and has lived there for more than fifty years. They had two children and now have two grandchildren. The family enjoys skiing, hiking, boating, and horseback riding.

Once he retired, Robin was diagnosed with Huntington’s disease (HD). This is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure.

Roger would then immerse himself into the HD Community.

He has become an integral part of the Huntington’s disease Olympia Support Group. He prepares a monthly HD fact sheet with reference information, upcoming events, website links to clinical trial updates, HD blogs, community resources, and other topic related information.

The Olympia Support Group meetings are held every first Monday of the month at Providence St. Peter Hospital. For more information, click here.

“Our Olympia HD Support group helps each other cope with this especially challenging condition,” Roger explains. “My wife attends exercise classes and rides horse back almost daily, hoping it will help in her fight against HD.”

Roger and Robin have attended Team Hope Walk events in Seattle and Olympia. They have also attended HD symposia in Oregon and Washington.

The couple also attended HDSA’s National Convention in Scottsdale, Arizona.

Roger’s dedication to the HD Community goes above and beyond the call of duty. Over the years, he has helped many people with the challenges of HD including housing, transportation, doctor appointments, and guiding them through the process of applying for Social Security benefits.

For example, for the past few years, he has been helping a homeless HD man in Centralia, Washington. He is helping him find a home in an assisted living facility, get the proper medical treatment, counseling to make sure he is living a safe life and is off the streets, and make sure he has the resources to manage his HD symptoms.

The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. This includes personality changes, mood swings, impaired judgement, involuntary movements, slurred speech, difficulty in swallowing, and significant weight loss.

Roger continues to help people in the HD Community and looks forward to the future.

“We are amazed at the progress medical research has made in trying to find treatments and even cures for this dreaded disease,” said Roger. “We are all doing much better in supporting clinical trials such as the new trial to suppress HD gene expression. We must get a better handle on this disease for the sake of all our children and grandchildren.”

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Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously.

The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by HD. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today and hope for tomorrow for people with HD and their families.

To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit www.HDSA.org or call 1(800)345-HDSA.

​This is a story featuring a personal experience with Huntington’s disease. If you would like to have your story told please contact Matthew Santamaria at msantamaria@hdsa.org.