The Jett Foundation Fighting Duchenne Muscular Dystrophy

Jett Giving News: Jett Foundation Helps Beverly Duchenne Muscular Dystrophy Patient Through Jett Giving Fund

March 2, 2017

250-1Beverly. Mass. – March 2, 2017Jett Foundation, a non-profit organization dedicated to raising awareness and funds for Duchenne muscular dystrophy, is helping a family from Beverly, Mass. to purchase a rotational medical bed through their new program, Jett Giving Fund. Max Gaudenzi, a 21-year-old with Duchenne, and his family seek to raise half the funds for a $50,000 rotation medical bed through donations on their First Giving Page. Jett Foundation will then match the remaining 50 percent and purchase the bed for the Gaudenzi family. This bed will help to alleviate Max’s constant need for adjustments throughout the night due to his diagnosis of Duchenne.

Health insurance often won’t cover all specialized medical and accessibility equipment such as scooters, shower chairs, ramps, rotation medical beds 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.

“My disease has taken away my ability to walk, feed myself, dress myself, and turn myself in bed. A rotating bed will make me more comfortable at night, and help me sleep better” said Max Gaudenzi. “Insurance refuses to cover it, but thankfully the Jett Giving Fund is here to help.”

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 would estimate that it costs an additional $100,000 per year in out of pocket expenses to raise a child with Duchenne,” says Neera Gulati, President of Suneel’s Light Foundation, a non-profit partnering with Jett Foundation on the initiative and the 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 and ProBed Medical Technologies. To learn more about the Jett Giving Fund or to become a sponsor, please visit www.jettfoundation.org/givingfund/.

See Max’s First Giving Page to learn more about their story and to donate.

https://www.firstgiving.com/fundraiser/NatalieGaudenzi/RotationMedicalBedForMax

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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