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Annual Walk4Life funds fight to cure ALS

Sally Gill knows entirely too well how amyotrophic lateral sclerosis sneaks in and steals life away.

She spent eight years watching it imprison her husband, Ben, in a body that no longer responded no matter how much his still-alert mind willed his muscles to act. Together, Sally and Ben spent eight years working to slow the disease, hoping medicine could treat the symptoms and buy them more time together — all the while knowing ALS has no cure.

It is, after all, the disease that took down the man known as the Iron Horse — Lou Gehrig.

The disease starts slowly with a little weakness, perhaps some twitching or a lack of coordination. The diagnosis is made only after other diseases are ruled out. Prognosis is for a life expectancy of three to five years after diagnosis. Ben Gill survived for eight years.

ALS gradually blocks and kills the motor neurons that carry impulses between the brain and spinal cord and the muscles. The muscles, no longer responding to signals to move, waste away. Ultimately, the condition affects the patient's ability to swallow, to breathe — nearly paralyzing the sufferer, usually without affecting his or her brain function.

Sally Gill lost Ben nearly a decade ago, but she continues to fight ALS alongside other patients and their families. She walks each year in the ALS Walk4Life, benefiting the Les Turner Foundation and its efforts to support families with information and to fund research into treatments and a cure.

Earlier this year researchers, funded in part by the foundation, discovered a common cause for all forms of ALS. The next steps will study how the information can be used to slow, stop or reverse the progression of the disease and whether it can be prevented.

Gill, of Bloomingdale, joins the Walk4Life on Saturday, Sept. 10, in hopes that the money she raises will help fund such research that will keep others from the fate Ben faced. Today, Gill tells us more about her drive to support the Les Turner Foundation.

My husband, Ben, died of ALS, often known as Lou Gehrig's disease, at age 53, almost 10 years ago, after living with ALS for eight years. To say simply that he was an inspiration would be to diminish how he handled his journey with the disease. His ability to handle it with grace, courage and humor inspires me to this day. I walk to honor him.

I am continually inspired by all of the ALS patients and families I've met over the years, and by all the generous and selfless people who have given their time, emotions and resources to fight this disease and to make things better for those going through it. I walk to acknowledge and honor them.

ALS has affected me in so many ways. Dealing with this disease and Ben's death was a profoundly life-altering experience, and a large part of my life. My family and I will never be the same. I not only lost a husband and partner, but went through the frustrating and sad experience of watching someone I loved deteriorate on a daily basis, knowing I could do nothing to stop the inexorable progression of this incurable disease.

Ironically, there have been some positives that have come out of this experience as well. In many ways, ALS drew our family closer together, and we all found more strength than we knew we had.

We grew to have a completely different perspective on those fighting disabilities or life-threatening diseases. We found many friends in the ALS community, and I have continuing relationships with many of them to this day. I walk to acknowledge the journey we took together and the people we've become on the other side.

Throughout our eight years of dealing with ALS, we received a tremendous amount of help from the Les Turner ALS Foundation. Almost from the beginning, they provided emotional support and guidance, as well as professional assistance from the foundation and the staff at the Les Turner/Lois Insolia ALS Center at Northwestern University School of Medicine in Chicago to aid us in every step of the disease process. I walk to thank them and to honor them.

I would advise anyone who is considering support of the 10th annual ALS Walk4Life to spend some time thinking about how their involvement fits into their life and what it might add to it. Let your loved one or friend be your inspiration, and take further inspiration from the patients and families who are facing this challenge now.

I've been involved with the ALS Walk4Life since its inception in 2002 as a walker, team organizer, co-chairman and volunteer. The walk is a positive, uplifting, high-energy experience, with many activities available for participants of all ages. You will not leave unaffected or unchanged.

If you would like more information about the Walk4Life or our team, Batting for Ben, please visit our website at alswalk4life.kintera.org/sallygill and consider joining us to support ALS families and to help conquer this disease. Currently, ALS is unstoppable. Let's make our search for a cure unstoppable as well!

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If you go

If you go

What: ALS Walk4Life

When: Check-in begins at 9:30 a.m. Saturday, Sept. 10; ceremony is at 10:30 a.m. and walk is at 11 a.m.

Where: Montrose Harbor, Montrose and Lake Michigan, Chicago

Cost: Fundraising encouraged

Donate: Support Sally Gill's fundraising in memory of her husband at alswalk4life.kintera.org/sallygill

Info: lesturnerals.org