Family Rallies After ALS Diagnosis
Rusty Perry always loved fly fishing and bow hunting. The Highland Park High School graduate and father of three has adorned his real-estate office with photos from his best catches. One fond memory, featuring a trophy deer at his son-in-law’s ranch, is also a bittersweet one for Perry.
“I hoped it wouldn’t be my last time, but I knew my hunting days were certainly numbered,” said Perry, owner of Vintage Interests, an industrial warehouse company.
Perry was diagnosed with ALS, also known as Lou Gehrig’s disease. It is a progressive degeneration of motor neurons, which results in loss of muscle control and movement. According to Perry’s doctor, Stan Appel of Houston Methodist Neurological Institute, it’s a condition where your body is deteriorating and you’re fully aware of it. The life span is two to five years.
Compared to the cancers and diseases that receive exposure, there is very little funding to support the research of this deadly disease.
“It’s a nasty and frustrating disease, and it’s frankly just been overlooked and neglected in the medical field for a long time,” Perry said. “I knew enough to know that it’s ultimately a death sentence and not a fun way to go.”
In 2012, Perry noticed something was off. He was at Lake Athens preparing for hunting season, and noticed that his bow didn’t pull with the same ease. He attributed it to aging or a slight injury. He worked harder in the gym, but there was no progress.
“ALS is a very frustrating disease to diagnose because there’s no definitive test,” Perry said. “If they don’t find something else, you start to see the writing on the wall.”
more about als
- The average life expectancy is about two to five years from the time of diagnosis.
- About 20 percent of people with ALS live five years or more.
- Approximately 5,600 people in the U.S. are diagnosed each year.
- ALS is responsible for nearly two deaths per 100,000 annually.
Source: The ALS Foundation
Perry was diagnosed in September 2013. The Perrys subsequently took a few family vacations and trips with close friends. If anyone asked, he’d confidently say that God has put him exactly where he wants him to be.
That marked the beginning of Hunting and Fishing for a Cure, a charity that focuses solely on raising money for the research of ALS. Perry’s wife, Amy, gathered friends together to plan a community event. Mary Anne Dunne, a longtime friend of the Perrys, was proud to be in that group.
“I couldn’t even speak I was so happy,” said Dunne, senior vice president at Benchmark Bank. “It was so fun to be able to do this for him.”
Their inaugural fundraising event was held at Dallas Country Club in October. Perry’s message moved the crowd to a standing ovation. Dunne, who chaired the event, said it was a testament to his courage and community support.
“I don’t know how he did it, but he got up there and spoke and everyone was so proud of him and cheering him on,” Dunne said. “He knows the outcome of this. He gets it, and he’s an inspiration.”
The event raised more than $1.2 million. Plans for a second event — to be held on Oct. 29, 2015 — are already in the works. The organization has no corporate overhead or full-time staff, so all event proceeds went toward research-based entities, such as the Houston Methodist ALS Research group and ALS TDI in Cambridge, Mass.
“It takes a lot of money to fund trials [and treatments],” Perry said. “We have a lot to do, but I think we’re moving in the right direction.”
Perry’s condition may be progressive, but so is his outlook, thanks to his faith and the love he’s felt from the community. His message is that you don’t have to have a fatal disease to reach out and make a difference. Things can change in a moment’s notice.
“There clearly has been some silver lining in this, and I know that I’ve touched a lot of people in the last couple of years and I hope to continue to do so,” he said.
Perry faces limitations, but he’s still just as active — as a husband, father, grandfather, businessman, and fighter.
