PRESS RELEASE: Jett Foundation Celebrates 16 Years Of Duchenne Muscular Dystrophy Awareness At Second Annual Gala

FOR IMMEDIATE RELEASE

Jett Foundation Celebrates 16 Years Of Duchenne Muscular Dystrophy Awareness At Second Annual Gala
Paul Wahlberg and Candy O’Terry to be Honored

Plymouth, Mass. – Jan. 12, 2018Jett Foundation, a non-profit organization dedicated to awareness and helping fight Duchenne muscular dystrophy, will host their second annual Shine a Light on Duchenne Gala at the State Room in Boston on Thursday, Jan. 25. Duchenne is the most common lethal genetic disorder of children worldwide. It is a progressive, life-shortening neuromuscular disease that causes the loss of muscle function and independence.

The evening will have an awards ceremony and live auction emceed by Liz Brunner, Lenny Clarke, and Johnny Pizzi. Honored guests include Candy O’Terry, president and co-founder of Boston Women in Media & Entertainment and Paul Wahlberg, executive chef and co-owner of Wahlburgers and Alma Nove. Bill Brett, award-winning Boston photographer, will also take the stage presenting his namesake award to Wahlberg. Major sponsors include Yale Appliance and Lighting, cm&b, and Sarepta Therapeutics.

Last year’s gala raised over $100,000 for the foundation’s Jett Giving Fund, an initiative that helps alleviate the financial hardship families affected by Duchenne face. Through the fund, the foundation has been able to help numerous families across the country purchase life-improving equipment such as accessible vans, power chairs, rotating beds, and stair lifts.

“Families dealing with Duchenne are living a costly nightmare,” said founder and executive director of Jett Foundation Christine McSherry. “This night is for them! We come together to help their fight by honoring our biggest supporters.”

Over the past 16 years, Jett Foundation has raised nearly $20 million towards Duchenne research, provided education and direct service programs to patients and families, and advocated for policies that expedite drug development. To learn more about Duchenne or to get involved with the foundation, visit jettfoundation.org.

About Jett Foundation
Since 2001, Jett Foundation, located in Plymouth, Mass., has worked to find treatments and a cure for Duchenne muscular dystrophy while improving and enriching the lives of those impacted. Jett Foundation is a registered charity with 501(c)(3) status from the IRS; all donations are tax deductible. www.jettfoundation.org.

Contact for Jett Foundation: Gabriella Diniz
gabriella@jettfoundation.org, 774-226-3694

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Last year's Shine a Light on Duchenne gala raised over $100,000 for our Jett Giving Fund. 

Last year's Shine a Light on Duchenne gala raised over $100,000 for our Jett Giving Fund. 

Christine McSherry: The Story Behind Her Success

Jett Foundation founder and Jett's mom, Christine McSherry, is featured on  The Story Behind Her Success–a podcast series hosted by Candy O'Terry. Each week, the series features inspiring stories of powerful women in our community and beyond.

Tune in below to hear the story of Christine's mission to save Jett's life and the journey Jett Foundation has taken to provide meaningful programs and services for young people and families impacted by Duchenne muscular dystrophy.

This podcast is also available on Apple Podcasts (iTunes), Stitcher, Google Play, Tunein and all Android platforms.

To listen to more stories of empowering women, please visit www.candyoterry.com.

Top 5 Ways You Can Give to Jett Foundation this #GivingTuesday

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There are so many ways to give back on #GivingTuesday and throughout the holiday season; we hope you’ll consider giving to Jett Foundation, whether it be your time, talent, or treasure.

 

1. Give the Gift of Donation

Jett’s Annual Appeal is underway and any gift this #GivingTuesday, no matter how small, makes a huge difference when it comes to financially sustaining our programs and services for families impacted by Duchenne muscular dystrophy and other neuromuscular disorders.

 

2. Apply to be a Jetting for Success College Coach or Mentor

We recently launched our newest program, Jetting for Success, aimed at supporting young people as they pursue a college education. Coaches will work 1:1 with our teens to identify schools that are able to support their specific needs, will help them secure resources, and more. Once enrolled in college, Coaches will continue working with our young adults, to include pairing them with a peer mentor. Learn more and apply to volunteer at www.jettfoundation.org/jetting-for-success.

 

3. Start a third-party fundraiser

Consider organizing a third-party fundraiser with Jett Foundation as your beneficiary. Individuals or organizations can collect funds via social media, host an event, or participate in the work of an existing third-party fundraising team. Visit www.jettfoundation.org/third-party-fundraise for more information and how to get started.

 

4. Purchase tickets or become a sponsor for our Shine a Light on Duchenne Gala

Our gala is a great way to give back while enjoying an exciting evening of cocktails, dinner, and auction surrounded by supporters, friends, and families within our Duchenne community. The gala will be held at the State Room in Boston on January 25, 2018. This year, we are honoring two dedicated friends of Jett Foundation: Paul Wahlberg, Bill Brett Spotlight Award winner, and Candy O'Terry, Beacon Award winner. Visit www.jettfoundation.org/gala for honoree, ticket, and sponsorship information.

 

5. Give back while you shop through AmazonSmile

Are you working on checking off that holiday shopping list? Let AmazonSmile give you a hand! Select Jett Foundation, Inc. when you shop at smile.amazon.com and Amazon will give a portion of proceeds to Jett Foundation.

 

How will you give back this holiday season? Let us know on social media!

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.