Jett Giving Fund Presents Procko Family With Accessible Van

50639.jpeg

Last Friday, the Procko family of Branford, FL, was delivered the gift of a lifetime: an accessible van for their 15 year old son, Evan. At the age of 4, Evan was diagnosed with Duchenne muscular dystrophy, a progressive neuromuscular disorder that impacts motor functions. However, Evan and his whole family have never let Duchenne stop him from playing an active part in his local community. 

Those who know Evan best would describe him as a happy and hilariously funny teen. He loves to paint and sells his masterpieces online. Earlier this year, Evan started using a scooter fulltime to get around.  This transition into a scooter meant that whenever Evan traveled by car, his dad and older brother had to lift him in and out of his scooter–a task both strenuous and dangerous. With Evan’s older brother heading off to college this fall and his dad nursing back problems, the Procko’s sought out the help of Jett Foundation and the Jett Giving Fund.

50644.jpeg

In 2017, Jett Foundation launched the Jett Giving Fund to help families impacted by Duchenne purchase expensive, yet vital medical and accessibility equipment. Oftentimes, health insurance will not cover the costs of accessible vans or other types of equipment, and without them, those impacted by Duchenne struggle to participate in daily activities. With the help of their family and friends, the Procko’s fundraised $21,250, half of the dollars needed to purchase their accessible van. The Jett Giving Fund matched the remaining amount, purchased the van, and gifted it to Evan and his family. 

With the start of school right around the corner, Evan’s new van will make pick up and drop off easier and  safer. The van’s ramp allows him to enter and exit the car without being lifted, making travel for the Procko’s less demanding and allowing Evan much more independence and freedom.

Thank you to our loyal supporters for helping fulfill the dreams and wishes of the Procko family! If you would like to support the Jett Giving Fund, please visit www.jettfoundation.org/jett-giving-fund.

 



Team Jett Tuesday: Kelly MacGrath

Kelly.jpg

Kelly MacGrath, our Finance Manager, was initially drawn to Jett Foundation because it allowed her to combine her background in the corporate investment industry to the nonprofit world. 

“At Jett Foundation, I am fortunate to be a part of a fabulous team working to make a difference in the lives of children and families impacted by Duchenne,” says Kelly. As a mother of two, nothing is more important to her than helping children. Kelly is truly inspired by the strong moms she has met through Jett Foundation who fight for a cure and the quality of everyday life for their boys. 

When Kelly is not keeping our finances in check, you can most likely find her on the sidelines of her children’s sporting events cheering them on. Outside of sports games, Kelly loves walking the beach, boating, traveling, and skiing with her husband, children, and their loyal Cavapoo, Ruby.


Chipping for a Cure at Grampy's Charity Golf Tournament

Pictured: Jordan Johnson, Diana Johnson, Margaret Lallier, and Russ Lallier

Pictured: Jordan Johnson, Diana Johnson, Margaret Lallier, and Russ Lallier

Jett Foundation was delighted to be included in the 34th Annual Grampy’s Charity Open at Foxwoods Lake of Isles course. This is the second year that Jett Foundation has participated, and we are so grateful that Grampy's Charities underwrites the event to support area nonprofits.

The two-day event kicked off with a reception at Ballo restaurant at Mohegan Sun where event coordinators, volunteers, and participants all got a chance to mingle.

The golf open on Tuesday the 30th featured beautiful weather and lots of laughs! We are so proud of our foursome: Community Ambassador Diana Johnson, her husband Jordan, and Russ and Margaret Lallier. Their participation brought in $3,500 and Grampy's Charities added an additional $1,500 for a total gift of $5,000 to Jett Foundation!

Thank you to Jimmy Castle and Fran Walenta from Grampy’s Charities for their support, the Lalliers for their generous donation in purchasing a foursome, and the Johnsons for golfing with us. We look forward to participating again in 2020!

On Patriots.com: Kids Battling Duchenne Muscular Dystrophy Meet Coach Belichick, Patriots Players

Photo by Eric J. Adler

Photo by Eric J. Adler

By Ross Bautista

Your life changes when you find out you have Duchenne muscular dystrophy. Your muscles drastically weaken around age 4, and life only gets harder from there. When this happened to Jett McSherry, his parents Christine and Stephen knew they had to step up and do something.

In 2001, Christine and Stephen started the Jett Foundation as a way to help kids and families like theirs. Disorders like Duchenne muscular dystrophy can isolate a child and cut them off from the rest of the world. The Jett Foundation has grown to connect affected boys and their families in a way that was never possible before. There’s strength in unity, and the purpose of the Jett Foundation was to give boys like Jett the interaction and opportunities they wouldn’t usually get.

“The foundation has direct service programs such as camps and programs for siblings. We raise awareness. We raise money. We try to have programs for kids who are losing muscles,” Christine said.

According to Christine, in their 18-year history, the Jett Foundation has been partnered with the Patriots for eight of them.

“It gives me chills,” she said. “They take very good care of us. They provide water and snacks for the kids while they’re here. The players come over and meet with the children.”

Despite the hard practice, Marcus Cannon, Tyler Gauthier, Cedrick Lang, Obi Melifonwu and Hjelte Froholdt arrived at the foundation’s sideline tent with bright smiles. They were ready to sign autographs, shake hands, and take pictures with the boys and their families as soon as they arrived.

Photo by Eric J. Adler

Photo by Eric J. Adler

Another special guest stopped by too -- Coach Bill Belichick himself. Coach Belichick was all smiles as he stopped by everyone’s seats to sign footballs and take pictures.

With Duchenne muscular dystrophy affecting boys at such a young age, they may never get the chance to experience sports. That’s why players like Marcus and Tyler are such heroes to them.

“This may be the closest they ever get to people that actually use their muscles for a living. These guys are superstars to them. They’re doing things that these kids could never do. The smiles on their faces are what it’s all about,” Christine said. “Just to see them smile.”

For the full article, please visit https://www.patriots.com/news/kids-battling-duchenne-muscular-dystrophy-meet-coach-belichick-patriots-players.

Thank you to Coach Belichick and the Patriots players for making this day so special for our boys!

Team Jett Tuesday: Neeve Prendergast

Neeve.jpg

Meet Neeve! She is working with us for the summer as the Marketing & Communications Intern. A rising Junior at Syracuse University, Neeve is a Public Relations and Policy Studies dual major. Prior to joining Jett Foundation, she worked with the Advocacy Department of the Food Bank of Central New York.

Neeve has always had a passion for helping others and she hopes to turn this into a career. Her dream job is to work in government relations advocating for others who may not be heard. This is what drew Neeve to Jett Foundation and she is looking forward to using communications to assist individuals and families impacted by Duchenne muscular dystrophy.  

Outside of classes and extracurricular activities, Neeve likes exploring new places near and far, and is looking forward to studying abroad in Spain in the Spring. A die-hard Boston sports fan, Neeve also loves rooting on her beloved teams. When she’s home in Massachusetts, Neeve enjoys spending time at the beach with her family, friends and a good book. You will rarely see her without an iced coffee in her hand, even in the middle of the freezing Syracuse winter.



Day 15: 62 Miles to Point Pleasant Beach, NJ

67278304_10218131284785376_9164250433340833792_n.jpg

JettRiders set out on their last leg of 2019 and cycled 62 miles from the Gagliaone home to Jenkinson’s Boardwalk in Point Pleasant Beach, NJ to cross the finish line. Friends and family gathered at 3pm to kickoff the parade and party to welcome and celebrate our riders.

67507004_10218131280985281_4563554738007703552_n.jpg

The parade proceeded down the boardwalk and onto the beach. Once on the sand, the riders dipped their tires into the ocean to officially end their cross-country trek! At the celebratory bash, riders were awarded medals and everyone had a blast! We are tremendously proud of our JettRide heroes and all their hard work and dedication to fight Duchenne! In total, they biked 700 miles and have raised over $36,000 to fight Duchenne. You can still donate to the JettRide team using the link https://www.firstgiving.com/event/11421/Jett-Ride-2019!

DSC_0092 (1).JPG
DSC_0200 (1).JPG
DSC_0125 (1).JPG

JettRide Day 13: 65 miles to Lebanon, PA

After the JettRiders left Landon West's home, they cycled 25 miles to have an early lunch with Rich Albertson and brothers Daniel and Casper impacted by Duchenne. From there, they cycled 40 more miles to the amazing welcome (including fireworks!) coordinated by the Hains family. Luke and Lance and the rest of the JettRiders were interviewed by a local television station and then took turns getting nice hot showers!

Check out the JettRider’s TV interview below!