Sandy Smith, grandmother, and Amy Bacon, mother of the late Justin Woods of the Justin Woods Foundation continue to raise money for a cure for Muscular Dystrophy and an adult camp for those afflicted. They are selling raffle tickets to help the endeavor. (Wendy Alexander)
Justin Woods was born February 3, 1992 but was not diagnosed with muscular dystrophy until he was 8. Although he lost the ability to walk at just 18, Woods did not let that keep him from leading a normal life. He attended College and got married at age 21.
“He was amazing, an inspiration to our whole family and probably stronger than all of us put together,” said Sandy Smith, his maternal grandmother. “And that’s definitely saying a whole lot, because we are strong. He had a great sense of humor and such a positive attitude.”
Justin Woods died Sept. 27 of last year at 23 years of age.
The Justin Woods Foundation started when Woods’ family held a benefit dinner when he was 9. The foundation was originally created solely to find a cure for muscular dystrophy, but when Woods’ camp changed their age limits to 17 and under, his family decided to start an adult camp as well.
“Originally my mindset was 100 percent on finding a cure,” said Smith, “but then when Justin was no longer able to attend his muscular dystrophy camp, which was one of his favorite things, it was then that we had the idea to start the adult camp. We wanted our campers to at least have the chance to get together once a year to reunite with friends. We didn’t want that to be taken away from them.”
Since its inception, the Justin Woods Foundation has raised more than $140,000 for awareness, for a cure, and for camps. This year’s camp will be held through Aug. 30 and will include a memorial celebration of Woods’ life on the 28th. More information is available on www.tuolumnetrails.org.
There is a new treatment for muscular dystrophy on the horizon, awaiting FDA approval, Smith said.
“The treatment adds a Band Aid to your DNA and causes your body to makes dystrophen, which allows the body to work properly. People with muscular dystrophy have no dystrophen,” she said.
Woods helped with many different studies on muscular dystrophy, including the six-minute walk, a test that is used to track a patient’s progress with a particular medication. There is a video recording of Woods performing this test, which is now shown to patients worldwide.
“In the tests I’ve seen, each time kids would get better and better to where they were almost running. For me, the thing that was so phenomenal was that at the end they were even able to jump,” said Smith.
Smith said what it would take in order to cure muscular dystrophy: “When you’re inside the womb you have a gene called utrophin, and then when you’re born it turns itself off and dystrophin starts. That’s another thing scientists are working on; if they can’t get the dystrophin to work, they need to find a way to get the utrophin gene to turn back on. If they’re able to do that, it will be the cure for muscular dystrophy.”
At this time, the Justin Woods foundation is holding a raffle through Tuolumne Trails.
“Tuolumne Trails wants to help the Justin Woods Foundation grow by allowing them to sell tickets,” said Smith. “Every time the Justin Woods Foundation earns $10 selling raffle tickets, Tuolumne Trails takes $10 off their bill. They also have another backer who, for every ticket that’s sold, they donate another $10.”
The prize for the raffle includes lodging and meals at Yosemite’s Rush Creek Lodge, a guided tour of the valley, fly fishing lessons, getting to see Yosemite in a private plane, and wine tasting at Yosemite Cellars. The raffle tickets are $10 each and can be purchased by visiting www.tuolumnetrails.org/raffle or by calling 395-6341.
Donations are also greatly appreciated and can be made by mailing them to 18830 Golden State Blvd. Madera, CA 93637 or by phone 395-6341.