Play Golf to End Duchenne Muscular Dystrophy

Jack Knight’s Positive Outlook Inspires His Community

Seventeen-year-old Jack Knight of Westminster has proved to be an inspiring, popular, and positive role model in the community despite the fact that he manages life with the diagnosis of Duchenne Muscular Dystrophy (DMD).  DMD is the most common lethal genetic disorder diagnosed in childhood. The disorder progressively causes loss of muscle function, and to date, there is no cure. Patients usually lose the ability to care for themselves.

But this diagnosis doesn’t hold Jack back. After walking became dangerous for him, he was given an electric wheelchair at the beginning of eighth grade, along with a service dog. And even though he is in a race against time as his muscles deteriorate, he’s adept at getting around easily, and has proven his skills through many activities, one of which is his high school marching band, where he uses his left hand to operate the wheelchair controller, and his right to play the baritone. He is in the STEM program and hopes to study engineering at the University of Colorado in Boulder after he graduates.

Jack was diagnosed in May, 2003, at which time his parents became involved with the Parent Project Muscular Dystrophy (PPMD), which fights every single battle necessary to end Duchenne. Founded in 1994, it is the only non-profit organization in the United States that takes a comprehensive approach to address the full impact and progression of Duchenne. Not only does it invest deeply in treatments, but it secures funding for research to benefit future generations. Its advocacy efforts help those with Duchenne live longer, stronger lives.

“Our involvement with PPMD has enabled us to connect with others going through the same thing we do, which is critical because it’s easy to feel scared and alone without a good support structure,” said Angela Knight, Jack’s mother. “Unless you are dealing with a child with muscular dystrophy each day, you just can’t fully understand the day-to-day challenges involved.”

Angela and her connections have volunteered as PPMD Connect Coordinators in Colorado, which supports the community by providing important human connections for those who need it. For example, funding helps parents pay to attend muscular dystrophy conferences, supports outings for the kids, as well as promoting the neuromuscular clinic and continuing education. Ultimately, this program funds research, education, and standards of care around the world.

Jack is part of the first clinical trial of a drug called Ataluren, which slows the progression of the Duchenne Muscular Dystrophy and has been approved in 26 countries but not the United States. Angela Knight has presented to the FDA in Washington D.C. to accelerate the process of approval with FDA executives.

When asked what she’d suggest to other parents who have a child with Duchenne, Angela said, “Go find somebody to talk to who has a positive attitude and learn everything you can, because only then can you feel you have the coping tools and information to advocate in situations that can help change the course of the disease.”

In order to raise $50,000 and find a big title sponsor to take research to a higher level, Angela and Jack host the annual Jumping Jack Golf Tournament in Westminster. This year will be the 15th annual golf tournament to be held on Monday, June 18, 2018 at the Legacy Ridge Golf Course in Westminster. Jack will be there this year, and likes to move around the golf course, taking raffle tickets, selling mulligans, and seeing all the activities that involve golfers.

Participation in the tournament is a unique way to enjoy a top-notch golf experience on a beautiful course. Golfers and non-golfers alike will want to shop the silent auction which offers over 200 items, ranging from wine and trips, to jewelry, and fun activities for kids.

All proceeds benefit Parent Project Muscular Dystrophy, whose mission it is to support and fund ongoing research efforts.

For more information about the golf tournament, visit www.parentprojectmd.org/jumpingjack.

 

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