First Year Walk Raising Money for Rare Disease

Published 06/18 2014 06:31PM

Updated 06/18 2014 09:37PM

WASHINGTON - If Huntington’s Disease is like a really, malicious game of chance... 

then Carl Ross and his family have been dealt a horribly, unlucky hand.

Two of his three daughters, Laura Kellenberger and Lisa Mamer, have Huntington’s Disease.

“My oldest is in a nursing home,” said Ross. “My middle daughter is at home with her family. But she requires assistance and supervision.”

So the Ross’s and their extended family are helping to find a cure.

 “Rather than sitting with our grief, we decided to fight.”

They organized the Central Illinois Team Hope Walk, which will take place in Washington on Saturday.

“We expect through this to donate all the funds raised to research.”

Here’s what they are fighting: Huntington’s Disease is a fatal disorder passed down from generation to generation. If a parent has the disease, the child has a fifty percent chance of being struck with the disorder.

Symptoms range from involuntary muscle jerks to serious psychiatric problems, which begin to show around middle age.

It’s important to note that Laura and Lisa don’t necessarily exhibit these symptoms.

“I do have a lot of guilt because I'm watching my sisters go through this,” said Kelly Ritter, Ross’s youngest daughter and the only one who doesn’t have Huntington’s.

She worries for herself and her three children.

“I live in fear everyday that I'll eventually start showing symptoms.”

Ross has four grandchildren who are at risk for Huntington’s, But that grows to seven grandchildren if Kelly starts to show symptoms. He Ross has hope, because scientists are getting closer to finding a cure.

They’ve been able to pinpoint the gene that leads to HD. Now, they are attempting a process called gene slicing.

“This will allow the disease to be possibly stopped in its place.”

Ross says the money raised through Central Illinois Team Hope Walk- about $60,000 and counting, will help.

“We are doing this for our grandchildren and everyone else who is affected by this illness”

Ross is told by the Huntington’s Disease Society of America that money raised is the second most by any walk of its kind.

The walk begins at 10 A.M. at the Rotary Shelter in Washington on Saturday, and it’s not too late to sign up.

Local business that have contributed to their cause include Uftring Auto Group, Disaster Recovery Management, and Your Hometown Community Banks. But Ross says the out powering from the community has been incredible.


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