Pushing hard in the fight against ALS

Randy Floyd, with his wife, Lisa.

Randy Floyd shares openly about the 17 members of his family who have had ALS, or Lou Gehrig’s disease, over the years. Eleven of those family members are now gone, including his mother.

Floyd, who walks with a cane, has been living with the disease for two years.

The tears came, though, when Floyd recounted his story at the 2014 kickoff dinner for the annual Walk to Defeat ALS in Winston-Salem in March. Among supporters and with other ALS patients among the audience of 50, Floyd had to stop several times for composure. His audience sniffled right along with him.

“I was diagnosed in June 2012, and although I had been expecting it, I had a hard time accepting it,’’ Floyd told the audience, “because I’d always been the husband, father, brother, uncle that all my family depended on when they needed something done. This is something I can’t fix and it drives me crazy.’’

2014 Walk to Defeat ALS

Floyd came to speak at the kickoff and was at the annual Winston-Salem Walk to Defeat ALS, held May 5 at BB&T Stadium.

Wake Forest Baptist Health is a gold sponsor of the Winston-Salem walk, and is home to one of the state’s five ALS clinics, where patients can receive multidisciplinary care and assistance during a single visit.

During the ALS Walk, teams and individuals walk a little over two miles to raise money for the Jim “Catfish” Hunter chapter of the ALS Association. Last year’s event in Winston-Salem drew 1,200 walkers and raised $141,000.

Floyd’s Fighters were among the teams walking. The team captain is Floyd’s daughter, Alisha, 27, who has a 50-50 chance of getting ALS herself.

The 80 family members and friends who are part of the team are largely from Floyd’s hometown of Mount Airy, but he has four cousins from Tallahassee, Fla, who also came for the second year in a row. Just as she was with him at the kickoff dinner, Floyd’s wife, Lisa, was there too. They’ll celebrate their 30th wedding anniversary in June.

Helping ALS patients

ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. The degeneration of motor neurons means the ability of the brain to initiate and control muscle development is lost over time. It is a fatal disease with no cure.

The ALS Walk is an important event for awareness and fundraising. Last year, the seven cities around the state that do an annual walk raised a combined $1.2 million, says Kara Strang, senior development coordinator for the ALS Association.

The money goes to directly benefit ALS patients in the form of annual grants available through the ALS association for medical and other costs not covered by a patient’s insurance. The chapter supports 400 people in North Carolina with the grants.

For example, ALS patients can use grants from the association to pay for wheelchair vans, power wheelchairs, adding wheelchair ramps to peoples’ homes who need them, repairs to accommodate patients, transportation to ALS clinics, and sometimes even for the one medicine available to some patients to help slow progression of the disease.

Besides its grants, the ALS Association also supports the five ALS clinics in North Carolina, has equipment loan closets for ALS patients across the state and advocates for ALS research funding in Washington, among other services. The association also certifies centers nationally; Wake Forest Baptist is one of two certified centers in North Carolina and 34 in the country.

Progress being made

Just as important as the direct assistance to ALS patients, money raised from the ALS walks also supports ongoing research into the disease.

Although Floyd represents the 10 percent of ALS patients who have a hereditary form of the disease, 90 percent of ALS cases are sporadic, meaning there is no known family connection. And many more people are believed to be undiagnosed.

Michael Cartwright, MD, a neurologist with Wake Forest Baptist Health who works with ALS patients, told those at the kickoff dinner he’s optimistic that in the next few years, much more will become known about how and why the disease progresses. Once that happens, better treatments to slow or prevent ALS can be developed, as has occurred with other types of neuromuscular diseases.

In addition, Cartwright told those at the dinner, new national clinical trials are getting started, with Wake Forest Baptist one of the trial sites, for medications that hold promise for improving muscle strength and slowing the disease progression.

For Floyd, 51, it’s all about the research. He is uncertain whether progress will be made in time to help in his own fight against ALS, but he knows there’s hope.

“There are things that I used to do that I can’t do any more,’’ says Floyd, who had to give up his longtime job as a body shop manager at a Mount Airy car dealership in 2013 because of the progression of the disease. “There are things that I wanted to do when I retired that I’ll not be able to do.

“I’m supposed to be the dad, take care of my family. But they’re going to end up taking care of me. I’m hoping and praying for the day when someone is diagnosed, that we can say ‘Don’t worry now, we have a cure for it.’”

Learn more about the Winston-Salem Walk to Defeat ALS at http://webnc.alsa.org/site/TR/Walks/NorthCarolina?pg=entry&fr_id=9728#

 

 

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