Naperville walk aims to combat Huntington's disease

George Stecyk needs only to look at his own family to see the cruel genetic game Huntington's disease plays.

Stecyk and his three younger siblings watched their dad suffer the degenerative brain disorder that, over the course of nearly two decades, steals a person's ability to walk, to talk and even to think and reason before causing death.

But the twist in Huntington's disease - which symptomatically is like Alzheimer's, Parkinson's and ALS put together, Stecyk says - is that the children and siblings of someone with Huntington's have a 50 percent chance of getting it too.

As the four Stecyk siblings cared for, then mourned for, their father, they knew the odds were pretty good that two of them would face the same fate.

Twenty years ago, scientists searching for a cure for Huntington's identified the gene that causes the disease. And while that knowledge hasn't yet led to development of a cure or even a way to slow Huntington's progress, it has allowed relatives of the 30,000 Americans with Huntington's - more than 200,000 people at risk - to decide whether to be tested to learn whether they carry the gene.

Stecyk chose to be tested and knows he doesn't carry the gene. His sister, Mary, chose not to test but has shown no signs of Huntington's. Their brothers, Don and Pete, didn't need the test to know the disease lurked in their DNA.

Stecyk and his family and friends on Sunday will join hundreds of other Huntington's patients and their supporters in the Team Hope Walk along Naperville's Riverwalk to benefit the Illinois Chapter of the Huntington's Disease Society of America. Today, Stecyk of Naperville tells us more about his family's experience with Huntington's disease.

George Stecyk:

Why do we walk? Hope.

"Team Hope" is fitting to describe why we walk - we hope a cure to Huntington's disease is discovered soon. Since its inception, we've walked in memory of our dad and with hope for a cure for our brothers, Don and Pete.

Don was symptomatic then and after more than 20 years, succumbed this past December. This is our 11th walk. We now walk in loving memory of our dad and brother, Don, and in fervent hope for a cure for Pete.

Huntington's disease is a fatal genetic disorder causing the progressive breakdown of nerve cells in the brain. It deteriorates physical and mental abilities and has no cure.

HD is the quintessential family disease because every child of a parent with HD has a 50/50 chance of carrying the faulty gene. There are roughly 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. HD is still relatively unknown and rare.

Coping with HD has been hard on our family. Dad suffered with HD from the late 1960s to the mid-1980s. We didn't know what was happening to him, but we knew something was changing. After being seen by several physicians, and being misdiagnosed several times, Dad learned he had Huntington's disease. We hadn't heard of HD; we had no idea what to expect.

Since then, the HD knowledge base has expanded tremendously. We now know what HD does to the person afflicted. We lost our dad to this disease in 1986 and our brother in 2014. Our family has lived with the realities of Huntington's disease for nearly 50 years, and so we continue the fight through efforts such as the Team Hope Walk.

The Illinois Chapter of the Huntington's Disease Society of America sponsors this walk and is a fantastic resource for families struggling to cope with HD. We're surrounded by people who understand the family impact of this disease. Support groups, social events, educational seminars and, most importantly, knowing that we are not alone have been vital.

Over the years, we've organized a team of family and friends for the walk. Our goal this year is to raise $10,000. My granddaughter, Maddie, has jumped in by raising more than $500 over the past three years making and selling HD-themed jewelry and other items at the walk - and she's only 8 years old! Some of our family's kids have gone door-to-door collecting donations. These kids are all right!

The walk is a family friendly and fun event with activities for kids, races, face painting, auction, raffles, DJ, and a donated lunch to enjoy. Consider walking, especially if you have a family member, loved one or friend with HD.

If you are learning about HD for the first time and would like to help, go to our team's page at hdsa.donordrive.com/team/Team2015 or donate through the chapter site at hdsa.org/il. Better yet, come out on Sunday.

If you go

What: Team Hope Walk to benefit the Huntington's Disease Society of America

When: Walk steps off at 10:30 a.m. Sunday, May 17; check-in begins at 9:30 a.m.

Where: On the Naperville Riverwalk from the Grand Pavilion west of Centennial Beach, 500 W. Jackson Ave., Naperville

Cost: $20; pledges encouraged

Info: illinois.hdsa.org