Riding for a Reason

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Each year, the JettRide delivers the gift of hope with young riders bicycling across multiple states to meet and spend time with families affected by Duchenne muscular dystrophy. Almost all of our JettRiders are siblings and friends of those affected by Duchenne and have decided to dedicate a portion of their summer to ride and raise awareness for Duchenne.

This year’s JettRiders want to meet YOU.

If you are close to any of the following locations, we are calling on you to help us support and celebrate our JettRiders.

7/22/18 | Washingtonville, NY
7/23/18 | Poughkeepsie, NY
7/24/18 | Millerton, NY
7/26/18 | Windsor Locks CT
7/27/18 | Danielson, CT
7/28/18 | Providence, RI
7/29/18 | Plymouth, MA

7/12/18 | Alexandria, VA
7/13/18 | Alexandria, VA
7/14/18 | Brookeville, MD
7/15/18 | New Freedom, PA
7/16/18 | Lebanon, PA
7/18/18 | Reading, PA
7/19/18 | Easton, PA
7/21/18 | Milford, PA

Here’s what you can do to support our 2018 JettRiders at they ride through:

1. Host the JettRiders for a night.

Do you live in one of the cities or towns we’re riding through? Sometimes JettRiders stay with host families who are impacted by Duchenne. It is super easy to host the riders and is a ton of fun. Contact Michelle at michelle@jettfoundation.org if you are interested in learning more about becoming a host family.

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2. Meet up with the riders for a fun activity on their journey. 

When our riders aren’t cycling, they are having fun taking in the local activities along the route. Meet up with the JettRiders at a local park, ice cream shop, pizza shop, etc. to get to know our riders and why they are inspired to ride.

3. Become a day rider.

Want to make a difference as a JettRider but can’t commit to the full ride? If you live close to southeastern Massachusetts, this is the opportunity for you! Our day riders raise funds for families impacted by Duchenne and then meet up with JettRiders for the last day of the ride. We’ve got a few friends joining us already, like 11 year-old Liam. Liam’s brother, Connor, is affected by Duchenne. Check out Liam’s fundraising page and his awesome video below about why he’s riding. If you are interested in being a day rider on the route, please contact Michelle at michelle@jettfoundation.org.

4. Donate to the JettRide team. 

Help this year’s riders meet their fundraising goal. All proceeds from their efforts help to support Jett Foundation’s programs for individuals and families impacted by Duchenne muscular dystrophy. Donate to the team at www.firstgiving.com/event/11421/jettride-2018.

5. Celebrate with us at the finish line.

You bring your family and we’ll bring the party! We encourage families and friends in New England to join us at this year’s finish line on June 29th at Cordage Park in Plymouth, MA. Be there to cheer on our JettRiders as they round out their inspiring journeys to raise awareness for Duchenne.

Above all, we ask you to help us spread the word about the 2018 JettRide; invite your friends and families to learn more about the ride’s impact and share this post to your personal social media. For more information about these opportunities, please reach out to our JettRide Coordinator, Michelle at michelle@jettfoundation.org.

See you on the ride route!

11 year-old Liam is joining the 2018 JettRide as a day rider for his brother, Connor. Here's his story.

Pay it Forward While Spring Cleaning

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It may be hard to tell in some parts of the country, but spring has finally arrived! We are just starting to feel warmth in the air here at Jett Foundation’s headquarters in New England, albeit intermixing with the final cool gusts of winter.

So many of us use this time of transition to refresh our homes with some spring cleaning. This year, as you get ready to tidy up and get rid of unwanted items, consider sharing your used equipment in Jett's Accessibility Consignment Store on Facebook.

 Sample posting in the store Facebook group.

Sample posting in the store Facebook group.

Jett's Accessibility Consignment Store is a convenient and safe space for families to share their resources with one another. Here are just a few of the items most requested to keep in mind as you work toward your seasonal purge:

  • stairlifts,
  • wheelchairs,
  • scooters,
  • shower chairs,
  • hoyer-lifts.

Head on over to Jett's Accessibility Consignment Store group today and you’ll be on your way toward making this year’s spring cleaning worth the hassle in more ways than one.

Jett Foundation Receives Major Gift from Cure Dale’s Duchenne

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With gratitude, we are thrilled to share the support of our newest partner, Cure Dale’s Duchenne. Joining us as a Freedom Sponsor, the Cure Dale’s Duchenne Fund, managed by the Community Foundation of North Central Florida, has designated a $100,000 grant for our Jett Giving Fund program. The Jett Giving Fund is a financial assistance program that helps families to purchase vitally important assistive and medical equipment such as accessible vans, stairlifts, and more.

Rick and Lelia Ginder founded Cure Dale’s Duchenne soon after their youngest son, Dale, was diagnosed with Duchenne muscular dystrophy at the age of six in April 2008. Since Dale’s life changing diagnosis, Cure Dale’s Duchenne has focused their support towards research efforts for Duchenne muscular dystrophy. While they continue to support and fund research, they also acknowledge the incredible need that families impacted by Duchenne face day to day.

 Lee, Dale, Rick, and Lelia Ginder

Lee, Dale, Rick, and Lelia Ginder

“We like the idea of making lives better right now. Let's help them now,” said Lelia Ginder. “The Jett Giving Fund helps families get what they need at this very moment. We want to partner with Jett Foundation to give not only equipment, but independence and freedom.”

The generous support of Cure Dale’s Duchenne makes it possible for us to transform lives through the Jett Giving Fund and make day-to-day challenges of living with Duchenne a little bit easier.

We cannot do this work alone. More families need our help. To become a sponsor of the Jett Giving Fund, visit jettfoundation.org/jett-giving-fund.

Camp Makes Summertime Special

This week, Jett Foundation learned–as did many of our community members–that multiple MDA camps were closing and/or relocating this year. Here at Jett Foundation, we operate three weeks of summer camp through our Camp Promise program with sites in Connecticut, Colorado and Washington states. Camp Promise, which serves people with muscular dystrophy and other neuromuscular disease, has no upper age limit and no geographical restrictions.

We empathize with the families and campers who have been affected by the recent news, and are looking into what Jett Foundation can do to support campers and volunteers this year, and in the future.

While we do not have any plans to open additional Camp Promise locations at this time, we encourage those impacted to check out the locations we do have currently available and to apply. Application deadlines are coming up on March 5th for volunteers and April 2 for campers.

Visit www.camppromise.org to apply today.

Dr. Brenda Wong to Lead Duchenne Program at UMass Medical

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We are thrilled that the Duchenne Program at University of Massachusetts Medical will launch this summer under the direction of Dr. Brenda Wong. It has been a longterm goal of the Duchenne community in the northeast to attract a physician who specializes in Duchenne.

We understand that this transition will be an adjustment for those who were previously under Dr. Wong's care, but we appreciate the work and planning that has gone into making this goal a reality for the families affected by Duchenne in New England and we thank UMass Medical and Dr. Wong for helping fill this massive unmet medical need in New England. 

For more information about UMass Medical's Duchenne Program, please visit www.duchennema.org.

Dr. Wong can be reached at Brenda.Wong@theduchenne.org for questions and concerns.

Jett Giving Fund Helps Tennessee Mom Fighting Breast Cancer Purchase Accessible Van for Teenage Son Living with Duchenne

 Misty, Nolan, and their new accessible van.

Misty, Nolan, and their new accessible van.

CHATTANOOGA, TN - January 28, 2018 - Today we helped a family from Chattanooga, Tennessee purchase an accessible van through our financial assistance program, the Jett Giving Fund.

Nolan, a 14-year-old with Duchenne and his mom, Misty, have raised half the funds needed for his $35,000 accessible van through their First Giving Page and through the generosity of the Chattanooga Civitan Children’s Foundation. Jett Foundation is matching the remaining 50 percent to purchase the van for the family. 

Soon after Nolan and mom Misty found out their family would get the life-changing van they needed through the Jett Giving Fund program, Misty learned the devastating news: she has breast cancer.

“Every morning, I take Nolan to school. I get him out of his chair and into the car. Then I have to load up the scooter trailer attached to our car with his chair. With my breast cancer diagnosis, I cannot lift,” says Misty Swafford. “So, what do I do? My 19-year-old daughter has been helping by getting Nolan into the car and when we get to the school, the principal comes out to the car to help lift him out for me.”

 Nolan testing out the van's ramp.

Nolan testing out the van's ramp.

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 doctor’s appointments, navigating the hallways at school, and going to the mall with friends.

"I won't have to lift him anymore. I will be able to just push a button, the ramp will come down, Nolan will roll up, and I'll strap him in. A 30 minute process will become a five minute process. Nolan won't be discouraged from going places anymore," Misty said when asked how this van will transform their daily lives.

Launched last year, the Jett Giving Fund has helped transform lives of countless families across the country. To learn more about Jett Giving Fund or to become a sponsor, please visit: www.jettfoundation.org/jett-giving-fund.

Shine a Light on Duchenne Gala Raises $200,000

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Jett Foundation celebrated its 2nd Annual Shine a Light on Duchenne Gala at the State Room in Boston on Thursday, January 25. With 260 guests in attendance and the support of 18 sponsors, we raised $200,000 to support the Jett Giving Fund.

The Jett Giving Fund is our matching gift program that assists families affected by Duchenne muscular dystrophy who are struggling to afford specialized equipment like accessible vehicles, scooters, and rotating beds.

The stage was set by our energizing, and often comedic, emcees: Liz Brunner, Lenny Clarke, and Johnny Pizzi. They welcomed Jett Foundation founder–Jett’s mom–Christine McSherry to the podium to kick off the evening’s program.

  Jett Foundation founder Christine McSherry, with Beacon Award winner Candy O'Terry, and emcees Lenny Clarke, Liz Brunner, and Johnny Pizzi.

Jett Foundation founder Christine McSherry, with Beacon Award winner Candy O'Terry, and emcees Lenny Clarke, Liz Brunner, and Johnny Pizzi.

“When I started this organization, 17 years ago, I was on a singular mission to save Jett’s life,” said Christine McSherry,  “But together, with this incredible community of parents, families, scientists, innovators, clinicians - we have not only saved Jett’s life, but also made a much bigger impact on this dreadful disease than I ever could have imagined. Together, with all of you, Jett Foundation has been able to shine a light on Duchenne, bringing this rare and unheard of disease into the spotlight.”

  President & CEO of the Boys and Girls Clubs of Dorchester Bob Scannell, Chef Paul Wahlberg, Jett Foundation Founder Christine McSherry, and Boston photographer Bill Brett.

President & CEO of the Boys and Girls Clubs of Dorchester Bob Scannell, Chef Paul Wahlberg, Jett Foundation Founder Christine McSherry, and Boston photographer Bill Brett.

Boston’s own beloved photographer, Bill Brett, was welcomed to the stage to present his namesake award, the Bill Brett Spotlight Award, to a longtime Jett Foundation supporter, Paul Wahlberg. Chef Wahlberg executive chef and co-owner of Wahlburgers and Alma Nove.

Candy O’Terry, president and co-founder of Boston Women in Media & Entertainment, was also honored with the Beacon Award. After accepting the award, Candy and friend Sherée Dunwell performed an incredible rendition of “For Good” from the broadway hit musical Wicked. All proceeds of the single’s sales will benefit Jett Foundation. The song can be purchased for $2.99 at cdbaby.com/cd/candyoterry2.

  Sherée Dunwell and   Candy O'Terry performing "For Good."

Sherée Dunwell and Candy O'Terry performing "For Good."

Just before the start of a lively auction, guests were reminded of the transformational impact of the Jett Giving Fund through the premiere of the Jett Giving Fund film, “Hopes and Dreams.” The film took viewers into the lives of two Jett Giving Fund recipient families, the Gaudenzi and McGourty families. Their personal stories left the room inspired to make a difference in the lives of the families we are working to serve in the upcoming year.

Special thanks to our lead sponsors: cm&b, Sarepta Therapeutics, Yale Appliance + Lighting, and an anonymous Angel sponsor who covered costs for our families to attend the gala.

Many thanks to our all of our 2018 sponsors: Carbone Metal Fabricator, Dr. John Kemmerer, Eastern Bank, Granite City Electric, The Hoesly Family, Ipswich Bay Glass, J. Calnan & Associates, Montilio's Baking Company, Powder Horn Press, Inc., ProBed Medical Technologies, Inc., Santhera Pharmaceuticals, Solid Biosciences, Stys Hospitality Initiative, The Assistance Fund

Thank you to Mary Chiochios and her team for their inspiring storytelling in the evening's short film–"Hopes and Dreams."

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.