The Jett Foundation Fighting Duchenne Muscular Dystrophy

Jett Giving News: Jett Foundation Helps Pennsylvania Duchenne Patient Through Jett Giving Fund

March 7, 2017

967fec5b-80d0-4b70-a6ab-00ae484a1e17Reading, Penn. – March 6, 2017Jett Foundation, a non-profit organization dedicated to raising awareness and funds for Duchenne muscular dystrophy, is helping a family from Reading, Penn. purchase a handicap accessible van through their new program, Jett Giving Fund. Ethan Pyles, a 14-year-old with Duchenne, and his family seek to raise half the funds for a $30,000 handicap accessible van through donations on their First Giving Page. Jett Foundation will then match the remaining 50 percent, and purchase the van for Ethan. This handicap accessible vehicle will help Ethan safely travel to doctor’s appointments, school, and friends houses.

Health insurance often won’t cover all specialized medical and accessibility equipment such as scooters, shower chairs, ramps, rotational medical beds, platform lifts and handicap accessible vans; items needed when suffering from a progressive muscle-wasting disorder. Without this equipment, those with Duchenne struggle to participate in the kinds of activities that most people take for granted, such as going to and from school and getting into friends houses.

“We spend a lot of time traveling to doctors’ appointments because of Ethan’s disease. A handicap accessible van where he can remain sitting in his powerchair would help us get there safely and more efficiently,” said Sandra Katzin, Ethan’s mom. “I don’t think it would be possible for our family to purchase the entire vehicle without help, which is why the Jett Giving Fund is such a godsend.”

There are over 1,000 Go Fund Me pages set up by families affected by Duchenne struggling to afford medical and accessibility equipment-and sometimes those families never reach their fundraising goal. Through the Jett Giving Fund, Jett Foundation partners with families affected by Duchenne to help ease the financial burden of medical and transportation equipment, which can cost tens of thousands of dollars and are out of reach for most families living with Duchenne.

“I estimate that it costs an additional $100,000 per year in out of pocket expenses to raise a child with Duchenne,” said Neera Gulati, President of Suneel’s Light Foundation, a non-profit partnering with Jett Foundation on the initiative, and mom of a 19-year old with Duchenne. “Suneel’s Light supports the Jett Giving Fund because there isn’t another program that helps families struggling to afford the equipment necessary to improve their child’s quality of life and maintain their independence.”

Applications for the Jett Giving Fund are available now. Applications are accepted based on the availability of program funds provided by generous Jett Giving Fund sponsors, Suneel’s Light Foundation, 2 Smiles 1 Hope, ProBed Medical Technologies, and United Access. To learn more about the Jett Giving Fund or to become a sponsor, please visit www.jettfoundation.org/givingfund/.

See Ethan’s First Giving Page to learn more about his story and to donate.

https://www.firstgiving.com/fundraiser/sandra-katzin/jett-giving-fund

About Duchenne muscular dystrophy

Diagnosed during childhood, Duchenne is a progressive neuromuscular disorder that causes a loss of motor, pulmonary, and cardiac function, and premature death. It affects every one in 3,500 live male births and some females. Duchenne has no cure. Children with Duchenne are born seemingly healthy and decline over time, usually losing their ability to walk around the age of 12 and succumbing to the disease in their early to mid-twenties.

About Jett Foundation

Since 2001, Jett Foundation, located in Kingston, Mass., has worked to find treatments and a cure for Duchenne muscular dystrophy while improving the lives of those affected by Duchenne through direct service, awareness, and educational programs. Jett Foundation is a registered charity with 501(c)(3) status from the IRS; all donations are tax deductible. www.jettfoundation.org.

Media Contact for Jett Foundation

Jon Salas, Jon@hollywoodpr.net

 

 

 

 

 

 

 

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