Team Hope
What is a Huntington's Hero?
A Huntington's Hero is an individual or Team in the HD community doing extraordinary things for the Team Hope Walk Program!
Heroes do not let Huntington's disease deter them from their goals and objectives. Instead, they rise to the occasion and never back down. We recognize these people as the true Heroes they are, as an inspiration or champion for others in the HD community. Hero stories are published on the HDSA Team Hope website.
Please submit your Huntington's Hero story to provide inspiration to families struggling daily with Huntington's Disease. You can make a difference by inspiring others! Send your stories to Nancy A. Rhodes, Director of Fundraising and Operations at nrhodes@hdsa.org.
Thank you for your support in providing help for today, hope for tomorrow.
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Autumn Margaret Kotrba, age seven, is the oldest of five siblings with another brother or sister on the way. This year, Autumn asked for money instead of gifts for her birthday. She didn’t tell them why but simply explained that she wanted to do something special. On Saturday, Sept. 24 - she did just that. Autumn took all of her present savings to Lincoln Park where the Team Hope Walk/Run was held to benefit the Huntington’s Disease Society of America Northern Plains Chapter (HDSA).
Her parents, Lynn and Jason Kotrba were totally surprised when she handed over $170 dollars to the volunteers at registration. “I just assumed she was saving up for an American Doll,” said her Aunt, Arnette Cariveau. Heartwarming tears filled the eyes of many who witnessed this child’s selfless act.
Even at seven-years-old Autumn understands that finding a cure is so much more important than getting presents. Autumn’s Grandmother and Aunt both passed away from Huntington’s disease (HD), her aunt sadly, just passed away in June. All funds raised at the walk support HDSA’s fight to improve the lives of people affected by HD and their families. The walk has raised close to $6,000 since its inception three years ago.
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For Larry Fuqua - a native of southern California- a love for the ocean and passion for surfing have been major parts of his life for more than 45 years. For someone who has surfed almost daily for this long to now face having to give it all up would not be Larry's choice. But unfortunately, it is his reality. Larry is slowly losing the ability to walk, talk, reason and even swallow. A little more than a year ago, Larry was diagnosed with Huntington's disease (HD) and while he faces a tough road ahead, Larry wants to take this time to focus on things most important to him - his family, his love of the ocean, and a desire to create more awareness about HD as well as to help raise funds that will support the invaluable research being done to find treatment and a cure for this debilitating disease.
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Four years ago the University of St. Thomas Mens and Womens basketball teams joined forces at the Minnesota Team Hope Walk and had a ball. They used the September 5k run as a nice Saturday morning workout in preparation for the season and have been back every year since. In 2008, over 30 participants from the teams joined "Team Deb Viau" to show their support for the HD community and all those that suffer from the disease. As players graduate we hope the tradition will continue on in the future and keep raising awareness about HD in the St. Thomas community. For more information on the teams, check out www.tommiesports.com. Go Tommies and thanks for your support!
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My father was diagnosed almost three years ago with Huntington's disease so that makes me at risk. When you try to talk to people about Huntington's most do not know what it is, so I feel that it is part of my job to be educated and to educate others on Huntington's disease. The best idea I could come up with was to host a benefit and for the proceeds to be donated to Huntington's to help find a cure. The benefit consisted of a silent auction, a raffle and the owner of the sports bar donated a portion of the sales from that night. It was a great turnout and we raised just about $2,200.
-Christina Busken
