KETV ABC: Hundreds walk at Lake Zorinsky to raise awareness of Huntington's disease
By Nick Amatangelo, Reporter/Mulitmedia Journalist
600 Nebraska families currently impacted by the disease
Huntington's Disease is a rare and fatal genetic disorder that breaks down the nerve cells in the brain. Thirty thousand Americans are diagnosed annually with the disease and about 600 families in Nebraska are impacted by it.
Many of those families took to Lake Zorinsky Saturday to raise funds and awareness to fight the disease.
Amy Dickes and her family were among the walkers. Huntington's disease has personally affected her.
"To see your child being a perfect child, and then you see her body deteriorate and then she's gone," Dickes said. "It's just unimaginable and no parent should have to go through this."
Dickes' daughter McKenna was diagnosed with an early-onset form of Huntington's when she was 11. She passed away three years ago at the age of 17.
"I miss her so much," Dickes said. "She would be 20 years old and I just wonder what she would be like right now."
The Huntington's Disease Society of America Omaha chapter holds the walk every year for families like Dickes'. Now in its 20th year, the walk supports those living with the disease and seeks to find the cure.
"Huntington's is fairly rare and a lot of people don't know about it," Dr. Amy Hellman said. "And just the importance of understanding it. Fundraising like this is extremely important because there's so much we can do. There's so much potential now."
Hellman is the director of the HDSA Center for Excellence in Omaha. She said recent findings have brought scientists to the cusp of a major breakthrough.
"We know the gene that causes Huntington's disease, and one thing that makes it a curable disease is that there's one gene that causes it," Hellman said. "And there's one spot on one gene that causes it. So we can really focus on how do we stop that gene from doing what it does."
The possibility of a breakthrough gives those living with the disease and their families hope for the future.
"I think that as we continue to bring awareness and support to the cause, that we will be able to have this as the last generation with Huntington's," HDSA Omaha Affiliate board member Tiffany Burkholder said.