TRAVERSE CITY — Uncertainty.
Jennifer Lewis says her life has been filled with uncertainty since the day her mother was diagnosed with Huntington’s Disease, when Lewis was just a baby.
“Everyone’s life is filled with uncertainty, no one knows if they will get cancer, what will happen to them. I just try to think of it like that,” said Lewis, 32, of Traverse City.
Huntington’s Disease is a devastating, hereditary, degenerative brain disorder that results in a loss of cognitive, behavioral and physical control, and for which there is presently no treatment or cure.
“My mom was diagnosed at 28 and lived with the disease for 19 years, the last seven in a nursing home,” said Lewis, quickly pointing out that neither she nor her older brother have shown any signs of the disease that usually hits at midlife.
According to the Huntington’s Disease Society of America, each child of a person with the disease has a 50/50 chance of inheriting the fatal gene and everyone who carries the gene will develop the disease.
“In terms of FDA-approved treatments, there are no disease modifying treatments that have become available, though some very, very exciting breakthroughs have been seen in laboratories and may move on to clinical trials,” said Fred Taubman, director of marketing and communications for the HDSA.
More than 30,000 people in the United States are currently diagnosed with Huntington’s and more than 250,000, like Lewis, are at risk.
“I know that I have a 50/50 shot and that if I do have it, my kids would have the same percentage chance that I do,” said the mother of two.
Genetic testing is available to determine if the mutated gene has been transmitted, but Lewis says she has decided to pass on that option for now.
“I could get tested, but I don’t know which is worse, to not know, or possibly to find out that I had it and could do nothing about it,” she said.
Lewis has chosen, however, not to just sit back and wait.
She is among the members of the HDSA’s local chapter who will hold Team Hope Walk for HD on Saturday, Sept. 15.
“So many people have never even heard of the disease. I want to spread the word about it and help work toward finding a treatment,” she said.
All proceeds from Team Hope Walk for HD benefit the Huntington’s Disease Society of America.
“We give support to caregivers, community services and research,” Taubman said.
The inaugural Team Hope Walk for HD begins with registration at 9 a.m. and walk at 10 a.m., Saturday, Sept. 15 at F&M Park in Traverse City. Registration is $15 per walker, children 17 and under are free.
Registration is available by mail to PO Box 72, Richland, MI 49083; make checks payable to HDSA, or online at www.firstgiving.com/hdsa-greatlakes/traverse-city-team-hope-walk
For more Team Hope Walk information, email Jennifer Lewis at Jenniferannelewis@hotmail.com.
For more information on Huntington’s Disease, visit http://www.hdsa.org/ or call 1-800-345-4372.
TRAVERSE CITY — Uncertainty.
Priest uses big rig to make special deliveries
Father Ray Cotter delivers more than sermons. Two weeks ago, the former truck truck driver turned priest drove a semi-tractor-trailer rig to Bolling Air Force Base in Washington, D.C., to pick up 1,164 free military computers for use in Michigan Catholic schools in the dioceses of Lansing, Saginaw, Gaylord and Marquette.Continued ...
Mental Wellness: Dealing with difficult people
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Body & Soul in Brief: 05/18/2013
Lupus meeting; cancer survivor picnic; Lyme disease support group; and more.Continued ...
Area Blood Drives: 05/18/2013
Find a blood drive in the area:Continued ...
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Health Newsmakers: 05/18/2013
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- Saturday, May 11, 2013
Competition puts students' theological knowledge to test
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Body&Soul in Brief: 05/11/2013
Senior Expo; church carnival; church yard sale; and more.Continued ...
Area Blood Drives: 05/11/2013
Blood drives in the area:Continued ...
Body&Soul Newsmakers: 05/11/2013
Michigan Blood has released the names of blood donors in Kalkaska, Leelanau and Wexford counties who recently reached new gallon levels:Continued ...
- Saturday, May 4, 2013
Volunteers bring mobility to amputees
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Adapted in TC: Advice from others only goes so far
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Body & Soul in Brief: 05/04/2013
Special Olympics Equestian team; Stroke Club marks 30 years; and more.Continued ...
Health Newsmakers: 05/04/2013
Michigan Blood donors reach new gallon levels:Continued ...
Area Blood Drives: 05/04/2013
Where to donate blood in the area:Continued ...
- Saturday, April 27, 2013
Pet remembrance service aims to provide support
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Mardi Link: Wishing, wanting and waiting
My husband, bless his heart, came to northern Michigan by way of Arizona, where year after year, April pretty much does what she’s told.Continued ...
Body & Soul in Brief: 04/27/2013
Day of Prayer; Church Women United; Breakfast series. (Plus more)Continued ...
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Area Blood Drives: 04/27/2013
Where to donate blood in the area:Continued ...
- Saturday, April 20, 2013
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Body & Soul in Brief: 04/20/2013
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- Priest uses big rig to make special deliveries