No cure, yes hope: Three residents share why they walk to fight Huntington's disease
Imagine losing your spouse to a disease that has no cure.
Now imagine that your children have a 50/50 chance of dying from that very same disease.
Huntington's disease is described as having ALS, Parkinson's and Alzheimer's all at the same time. HD is characterized by a triad of symptoms, including progressive motor dysfunction, behavioral disturbance and cognitive decline.
It 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.
Every child of a parent with HD has a 50 percent chance of inheriting the faulty gene that causes Huntington's disease. Today, there are approximately 41,000 symptomatic Americans and 200,000 at risk of inheriting it.
In less than 10% of cases, juvenile Huntington's disease (JHD) affects children and adolescents. JHD usually has a more rapid progression rate than adult onset HD; the earlier the onset, the faster it progresses.
To help fight the disease and hopefully one day find a cure, the Illinois Chapter of the Huntington's Disease Society of America (HDSA) will host the Naperville Virtual Team Hope Walk Sunday, May 17. Registration is free.
For a virtual walk, participants choose their own course: the driveway, neighborhood, around the house or even a treadmill.
Team Hope is HDSA's largest national grass-roots fundraising event, which takes place in more than 100 cities across the U.S. It has raised more than $14 million for Huntington's disease since its inception in 2007.
"After 15 years of walking in person to support the mission and vision of HDSA, I'm excited to do a virtual walk due to the COVID-19 virus," said Dave Hodgson, HDSA's Illinois Chapter vice president in a press release.
"We hope to still get people excited about advocating for those HD families who need our help and support."
For more information about the event, contact Hodgson at email@example.com. Online registration and donations can be found at hdsa.org/thwnaperville.
To learn more about Huntington's disease and the work of the Huntington's Disease Society of America, visit HDSA.org or call (800) 345-HDSA.
Below, three residents share their experiences with Huntington's and tell us why they are walking May 17.
Hodgson Family Team poses for a photo during the 2017 Team Hope Walk in Naperville. Dave Hodgson is in the back, wearing the baseball hat.
- Courtesy of Mary Bos
Dave Hodgson, Somonauk (formerly of Naperville)
In 1986, my late wife, Paula Hodgson, was diagnosed with a devastating neurodegenerative disease called Huntington's disease, or HD.
It's a disease of the brain for which there is no cure or treatment. HD destroys brain cells that control cognitive, behavioral and physical abilities.
It's caused by inheriting a mutated gene from just one parent. Every child of that parent is at-risk for inheriting the mutated gene. Eventually, Paula needed care 24 hours a day.
It is always fatal.
Paula was an RN and had to quit working because she could no longer carry out the responsibilities required of nurses. I became her caregiver for the last 10 years of her life. She died in 2004 from complications caused by HD.
In 2005, I married my current wife, Susie. She and I met in an online support group for HD. Susie lost her husband to the disease in 1999. Between us, we had seven children: Susie had three boys and I had one son and three daughters. All were at risk of inheriting the mutated gene.
As the years progressed, Susie's oldest son Bob tested positive for the bad gene. My son, John, and my daughter, Emily, also tested positive.
Bob was diagnosed in 2002 and died at age 48. John was diagnosed in 2014 and died at age 45. As parents, we're not supposed to bury our children.
In 2005, Susie and I decided to do something about this devastating disease that haunts more than 12,000 people in Illinois. We gathered family and friends and decided to do a walk. None of us had ever taken part in a walk, so we flew by the seat of our pants.
Our goal was to advocate for those families in Illinois that had HD and to support the mission of our national organization, HDSA. Our first walk had about 100 participants. From that first walk, our Team Hope Walk has snowballed into the largest HD Team Hope Walk in the nation.
Last year, after walking annually for 15 years, we surpassed the million dollar mark. Our mission is to improve the lives of everyone affected by Huntington's disease and their families. To us, family is everything. If we don't walk, who will walk for us?
Due to the coronavirus pandemic, this year's event will be a virtual walk. For more information on how you can get involved, visit illinois.hdsa.org/about/2020-naperville-team-hope-walk.
For more information about HD, visit illinois.hdsa.org.
Ann Terry at a previous Huntington's disease Team Hope Walk in Naperville. This year's walk takes place May 17 as a virtual event.
- Courtesy of Ann Terry
Ann Terry, Aurora
My name is Ann Terry. I was born in Hammond, Indiana, and raised in Lansing, Illinois. I currently reside in Aurora.
I am a board member for the Huntington's Disease Society of America-Illinois Chapter.
This cause is very meaningful for me. My father, James Terry, and other close relatives have passed away from Huntington's disease. My father was born in Minnesota but spent most of his life in Hammond and Lansing.
He was married to my mother, Kathy Terry (Sibbert), for almost 45 years before she passed away in 2010. At that time, she was my father's primary caretaker.
He worked at Inland Steel in East Chicago, Indiana, for 25 years before he was diagnosed with HD. It took us awhile to figure out what his symptoms were since we had no prior family history that we knew of regarding HD.
He was one of the smartest, funniest, kindest people I have ever known. Rarely did you see a frown on his face, even when battling HD.
He lost that battle in 2016.
I have one brother, and neither of us have chosen to be tested at this time. Walking and raising money is my way of giving back to the HD family. We are so close to finding a cure! When that happens, we will continue to advocate, educate and fundraise for treatments.
All funds raised during our walk will go directly to HD families in Illinois. This money helps with at home care, medical expenses, social worker services, support groups, scholarships to our annual national convention and many more resources.
I am so blessed to be a part of the HD family. There is so much hope and inspiration! Anything you can donate would be greatly appreciated.
You can donate through our website at illinois.hdsa.org. Click on my name, Ann Terry, and it will take you to the "Donate Now" page. Thank you so much!
From left, front, at the 2019 HD Walk in Naperville, Skylar, Logan and Hailey Hucker of Lindenhurst; Judy Galasek of Oak Park; Gretchen Craig of Oakbrook Terrace; and Wayne Galasek of Oak Park. Back row, Andy Hucker of Lindenhurst, Mat Craig and little Corbin Craig of Oakbrook Terrace and Sandi Hucker of Lindenhurst.
- Courtesy of Wayne Galasek
Wayne Galasek, Oak Park
We walk to raise money for research and public awareness of this horrifying condition called Huntington's disease.
My wife, Judy, tested positive in 2004 and has been symptomatic for about 10 years. She inherited the disease from her paternal ancestors, where both her father and grandfather died from complications.
There was no way to definitively test for HD prior to genome sequencing in the 1990s, but family anecdotal evidence indicates a long history of symptoms.
HD is passed via DNA, and each child has a 50:50 chance of inheriting the disease from an afflicted parent -- if a child does not receive the gene, their descendants will be forever free of it.
One of my wife's brothers tested negative. However, since Judy has HD, our two daughters and four young grandchildren are all at risk.
HD is characterized by gradual, irreversible brain deterioration and loss of control over voluntary muscle movements. The ability to make simple decisions, hold conversations or even walk are severely diminished, and the patient's personality is subject to a constellation of behavioral changes.
Our family watched in horror as the disease changed Grandpa's demeanor from a sweet, gentle man to a belligerent, unpredictable and challenging curmudgeon. Several uncles were confined to wheelchairs and required 24-hour care.
Imagine all the symptoms of Alzheimer's, ALS and MS rolled into one condition that affects each person differently -- but without medication to minimize the symptoms and no cure.
People ask us why we had children knowing the risks. The simplest answer is that we always had hope that a cure or medicines that reduced the symptoms would be discovered. That deep, abiding faith gave our children full, rich lives that would have never happened had we decided to stop the gene from being passed.
We also pray that our grandchildren will be given that joyful future.
Today, vigorous research indicates that a cure is possible, perhaps even imminent. Medical science has identified the cause and is working to stop the gene from delivering its deadly message to the brain and body. This gives all families afflicted with HD renewed hope, and is Why We Walk for HD.
If you would like to support research, please visit illinois.hdsa.org/about/2020-naperville-team-hope-walk.