Witch Way is the Candy? Halloween with Duchenne

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For most children and teenagers, Halloween is a long awaited evening of mischievous activity and ghastly fun. There is nothing quite like pulling on a spooky costume, skipping down the street, and trick or treating with buddies.

But, for families impacted by Duchenne, Halloween often highlights the heartbreaking decline in function that is characteristic of this disease. Parents witness their child struggle to do activities they could do last year, such as climbing the front stoops of neighborhood houses and holding full bags of candy. Because driveways, sidewalks, and houses are not handicap accessible, young people with Duchenne may have to wait for their friends and siblings at the end of a driveway or even stay at home.

You can help make Halloween easier for children and families with disorders like Duchenne.

This year, consider giving candy away at the bottom of your driveway, close to the sidewalk or street. If your driveway is smooth enough for wheelchairs, be sure to clear it of slippery wet leaves and rogue sticks to make sure it is safe for any and all ghouls and goblins, on wheels or on foot, who may stop by.

Happy Halloween!

Press Release: Jett Foundation Helps Massachusetts Family Support Son Living With Duchenne Muscular Dystrophy

BEVERLY, Mass. - October 24, 2017 - Jett Foundation, a non-profit organization dedicated to raising awareness and funds for Duchenne muscular dystrophy, is helping a family from Beverly, Mass. purchase a lateral rotation bed through their financial assistance program, Jett Giving Fund. Max Gaudenzi, a 22-year-old with Duchenne, and his family have raised half the funds needed for his $45,000 rotating bed system through their First Giving Page.  ProBed Medical USA, Inc.,  has generously donated $10,000 to reduce the price of his Freedom Bed and Jett Foundation is matching the remaining 50 percent to purchase the bed for the Gaudenzi family. Max is set to receive his bed on Friday, Oct. 27, 2017.

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 being able to sleep at night.

“Each night, I call my parents six times to have them help me turn him in my  bed,” said Max Gaudenzi. “As a result, my parents don’t sleep well at night and can’t perform well at work the next day. Duchenne doesn’t just affect me; it affects everyone near me.”

A person living with Duchenne cannot turn themselves at night; something an able-bodied person does once every 10-12 minutes while sleeping. This movement is critical to Max’s health as it keeps blood flowing throughout bodily tissues. When that blood flow is restricted, there is an increased risk for pressure injuries, pneumonia, accelerated muscle degeneration, and other life-threatening side effects.  The Freedom Bed is designed to mimic the body’s natural movement at night, providing continuous movement to the sleeping person. Thanks to the Jett Giving Fund, the Gaudenzi family will be able to receive the sleep they desperately need, resulting in overall better health for the entire household.

Launched earlier this year, the Jett Giving Fund has helped transform lives of countless families across the country as the Jett Foundation helps them raise funds for life-changing equipment vital to their health. To learn more about the Jett Giving Fund or to become a sponsor, please visit: www.jettfoundation.org/givingfund.

To learn more about the Freedom Bed, please visit www.pro-bed.com.

 

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@hollywoodagency.com

 

Onsite Contact for Jett Foundation

Gabriella Diniz, gabriella@jettfoundation.org

Wrapping Up #HugsforDuchenne 2017

Jett Foundation is feeling all the love - thank you to everyone who snapped, tagged, shared and donated as part of #HugsforDuchenne! Our September-long campaign to collect #HugsForDuchenne generated nearly 1,000 hugs on Instagram, Twitter, and hugfunders.com. Thank you to our generous #HugsforDuchenne sponsors - ICUC Social, Wahlburgers, Novara, Abby Park, and Station Eight who donated dollars to match our hugs and help keep kids and young people affected by Duchenne walking, skipping, jumping, breathing, hugging, and living longer.

Many of our #huggers put their money where their hugs were and donated to our campaign- thank you to our #HugsForDuchenne Hero Club members:

  • Sandra Katzin and her hero Ethan

  • Jean McSherry and her hero Jett

  • Michelle O’Connell in honor of Jack and Ryan

  • Krista Ward in honor of Landon

  • Paula Caruthers in honor of Landon

  • Donna Perkins in honor of Landon

  • Melissa Cornelia in honor of Landon

  • Cornelia Wilson in honor of Landon

  • Marlene Temple in honor of Landon

  • Darlene Ginnett in honor of Donovan

  • Virginia Young in honor of Donovan

Although September is over, Jett Foundation continues to enrich the everyday lives of children and young adults with Duchenne through direct service, education, and advocacy that provides transformative summer camp experiences, alleviates the financial burden of accessibility equipment, and provides empowering educational resources that prepares patients and families can be their own best advocates. Jett Foundation exists to serve the Duchenne and neuromuscular community and to meet unmet needs of affected families, follow our work and stay up to the date on latest news in Duchenne by following us on Facebook, Twitter, Instagram and LinkedIn.

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#HugsforDuchenne Hero Club Blog!

Jett Foundation is feeling all the love - thank you!  Our month-long campaign to collect #HugsForDuchenne is half way through - we have collected 235 hugs through photos on Instagram and twitter and though our hugfunders.com website. A huge thank you goes out to our sponsors  - ICUC Social, Wahlburgers, Novara, Abby Park, and Station Eight who have all donated dollars to match each hug.

Jett Foundation Gifts Texas Family Handicap Accessible Van Through Jett Giving Fund

Jett Foundation is delighted to announce our second Jett Giving Success story! Earlier this week, we gifted 12-year-old Aidan Braswell a stair lift for his home in Wylie, Texas. This van will help Aidan, who is in a power chair, safely travel to doctor's appointments, friends and family's houses, and to school, and it will help Aidan remain as independent as possible despite living with Duchenne muscular dystrophy.