Dave and Susie Hodgson know the stats as well as anyone: Huntington's disease usually strikes adults in their 30s or 40s; one in 10,000 Americans has Huntington's; none will survive.
But what the Sandwich couple knows better than most is what those stats mean in the everyday life of a Huntington's sufferer and his or her family.
If you goWhat: TEAM HOPE-Walk for a Cure
Why: Proceeds support the research and programs of the Huntington's Disease Society of America
When: Registration is at 9 a.m. Sunday, May 10; walk begins at 10 a.m.; picnic and games follow the walk
Where: Danada Forest Preserve, Naperville Road south of Butterfield Road, near Wheaton
Cost: $20 registration; pledges and donations encouraged
Dave and Susie each lost a spouse to Huntington's. They've seen the degenerative neurological disease eat away at the person they love, taking an adult in the prime of life and reducing their physical and mental abilities until they are no longer able to care for themselves or even to talk about what's happening.
They know the emotions of years spent caring for a spouse with Huntington's and knowing it will be fatal, of worrying that the odds are 50-50 their children will suffer the same fate, of figuring out how to continue living after burying your spouse sometimes 10 or 15 years after diagnosis.
That's how they met, looking for guidance on how to cope after losing a partner and offering support to others. Together now, they honor their spouses and all families affected by Huntington's disease with the TEAM HOPE-Walk for a Cure, the fundraising walkathon they started.
Today, Dave Hodgson of Sandwich tells us more about life with the disease and the walk he and Susie started.
Mention "HD" to many people and they immediately think "high definition" television. To more than 1,600 families throughout Illinois, HD means a death sentence.
Huntington's disease, or HD, is a devastating hereditary neurodegenerative disease of the brain for which there is no cure or treatment. It is a death sentence for those diagnosed with the disease. Susie and I decided to do something that would bring awareness and help lead to a cure by advocating for all HD families.
HD strikes young people in the prime of their working age. It takes away a person's ability to think, speak, eat, walk, dress oneself, until the person is totally dependent on others to care for them. The disease normally lasts 10 to 15 years before death occurs from complications of HD.
Susie and I lost our respective spouses to HD, which haunts both of our families. Bud lost his life in 1999. Paula lost her life in 2004. Susie and I met in an online support group for HD, searching for answers on how to cope with losing one's lifemate. After meeting at a national convention for HD, we continued to help other families cope with what we had been through.
After Susie and I were married in 2005, we decided to do something that would honor all families in Illinois fighting HD and thought a walkathon might be a great way to do this. We formed a committee and began the planning for our first walk.
We were very surprised when we netted $16,000 for the first TEAM HOPE-Walk for a Cure. Through our seven annual walks, the HD families of Illinois have raised more than $325,000.
The Huntington's Disease Society of America nationally honored our walk with "Best Sustaining Fund Raiser." Our walk recognizes all families in Illinois that deal with this tragedy.
The most difficult part of doing our walk is that some who walked with us in past years are no longer here to walk with us. The amazing families that have lost loved ones to HD continue to join us every year to help find that elusive cure or treatment that will eventually stop this disease.
The walk renews hope that a treatment or cure may be "just around the corner."
This year's eighth annual TEAM HOPE-Walk for a Cure will be Sunday, May 20, at Danada Forest Preserve in Wheaton. Registration begins at 9 a.m. and the walk begins at 10 a.m. Following the walk, a picnic-style lunch will be served to participants. There will be games for the youngsters and good conversation with other HD families.
Like all walkathons, participants will gather pledges from their family and friends. The walk is open to the public.
For information about the walk and to register, visit our website, hdwalk.org. To donate, call (630) 443-9876.
The Illinois Chapter of HDSA is a recognized 501(c)(3) nonprofit charity and we are all volunteers.