With today’s vast medical advancements, many diseases which once were incurable, are now either manageable or can be completely cured. Unfortunately, Amyotropic Lateral Sclerosis, or ALS, is a diagnosis that still brings with it not “if it will take my life,” but “when it will take my life.” In November 2013, Larry Vance Hughes of Clemmons, was one of the estimated 5,000 people in the United States diagnosed with ALS each year; yet he faced this battle as he had any other challenge in his life, with a strong faith in Jesus Christ and peace that got him through the one year and one month of his declining health and passing. It takes a special person to look past an ALS diagnosis and focus on how to make a difference in the time he had left and in the future.
Larry also chose to not focus on himself and what was ahead, but instead on doing what he could to work toward a cure.
Brett Hoge, Larry’s stepson, said, “Not long after his diagnosis, one night over dinner, Larry and I discussed how we could make a significant impact on ALS Research, with the help of his co-workers, contacts and friends. I contacted Dr. Richard Bedlack, who opened the Duke ALS Clinic in 2001, to run the idea past him. Dr. Bedlack was cautiously optimistic as he has had several families over the years try to help to raise money with very little success. In the 15 years before we set up the Larry Vance Hughes (LVS) ALS Foundation, Duke had raised a total of $50,000 for research. Through the LVH ALS Foundation, we have given Duke ALS Clinic more than $1,000,000 to date and helped inspire other families to do the same.” In the six years since Larry’s diagnosis, the LVH ALS Foundation has been host to a variety of events, from a golf and dinner benefit, to Kentucky Derby parties, and this year, a concert.
Never Forget the Man Behind the Cause
As time has gone on, people tend to forget why the foundation was started and the man behind the movement. “I made Larry a promise that I would keep the foundation going as long as I could or until we find a cure,” said Brett. “We have tried to create events that everyone would like to attend whether they have a personal connection to ALS or not. I took 2018 off from LVH events and really focused on how to make the best use of my and the volunteers’ time, raising as much money as possible. A friend of mine is Ken Duke, a PGA tour player, and last year, during his tournament, I met Mark Wills, a country music artist, and I started brainstorming about holding a concert with Mark as the headliner. He agreed and then just a few months ago, I met Taylor Hicks, winner of the fifth season of American Idol, and asked him about the concert and, without hesitation, he was in too. I want people to give back to their communities, through whatever is your passion and it’s important to me as a dad of two daughters to get them involved and see firsthand what it takes to make a difference.” The upcoming LVH ALS Benefit and Concert will be on October 16thfrom 5:30-10pm, at the Millennium Center in Winston-Salem, featuring a “meet and greet” with the performers, drinks, appetizers, an update from Dr. Bedlack on ALS research, a live auction, raffle and a performance from country music legend, Mark Wills and Taylor Hicks.
“All the money raised by LVH ALS Foundation has gone into our ‘ALS Reversals’ program, helping us confirm 41 cases, in which a person had ALS, progressed and then, unexpectedly recovered a significant amount of their lost motor function,” said Dr. Bedlack. “If we can understand why these patients got better, we hope to make this happen more often in other patients. In recent years, we helped discover new genetic causes of ALS and test new mainstream treatments for it. We started and continue to lead the only program, ALS Untangled, that systematically reviews alternative and off-label ALS treatments, as well as teaching patients and families how to have a greater role in research through our ALS Clinical Research Learning Institute.”
In life, you never know the path you face, and Larry would never have chosen to leave his wife, Kim, and family, but he did always want to make the world a better place in any way he could, and he has done just that with the LVH ALS Foundation. “If Larry could see where we are today with the foundation, he would be humbled,” said Brett. “He never wanted the spotlight; he just wanted to help others. We were blessed to have him in our lives. Larry never asked ‘why me?’, his response was always ‘why not me?’ If we can save one life or one family from going through the heartache and struggles we went through, then everything is worth it.”
For more information on the LVH ALS Foundation Benefit and Concert, visit lvhalsfoundation.org/2019-lvh-benefit-concert/.
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