Pease Family Receives Accessible Van

Thanks to continued support from our community, donors, and sponsors, Jett Foundation has partnered with another family through the Jett Giving Fund! Late last month, the Pease family in Georgia received their newly converted van, making everyday travels for Ryan and his parents, Kathryn and Paul, a little bit easier and a whole lot safer.

"We have been praying for a way to afford a converted van with a ramp so that we can easily roll Ryan in and lessen the amount of lifting we do every day," said Kathryn Pease. "We have been blessed by the Jett Giving Fund which has come along side us to help fundraise and match all funds that we raise towards getting an accessible van for our son.”

Our Jett Giving Fund works with individuals and families impacted by Duchenne muscular dystrophy to purchase vital medical and mobility equipment that is otherwise unaffordable. Without the generosity of supporters like you, we simply could not meet the incredible demand for this type of assistance.

Thank you for helping bring joy and mobility to our community!

If you would like to support the Jett Giving Fund, please visit www.jettfoundation.org/jett-giving-fund.

 
 

Going the Distance for Duchenne: Inspirational Teens to Bicycle from Alexandria, VA to Plymouth, MA for Children and Young Adults Impacted by Duchenne Muscular Dystrophy

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PRESS RELEASE: Plymouth, Mass. – June 6, 2018 – A group of inspiring young people will join Jett Foundation, a non-profit organization dedicated to awareness and helping fight Duchenne muscular dystrophy, and its Go! for Duchenne athletic initiative for the 10th annual JettRide July 12th through 29th. This annual cross country bicycling tour for teens–sponsored by Perky Jerky® and Shea Concrete Products–spreads awareness, raises funds, unites families, and inspires communities to join riders in fighting Duchenne. Duchenne is the most common lethal genetic disorder of children worldwide affecting 20,000 young people in the United States. It is a progressive, life-shortening neuromuscular disease that causes the loss of muscle function and independence.

The JettRide cyclists will start their journey in Alexandria, VA and will ride about 50 miles per day for three weeks on their journey to the finish line in Plymouth, MA. Each night, JettRiders spend time with local families along the ride route impacted by Duchenne muscular dystrophy. At the finish line on July 29, riders will be joined by family, friends, and community as they round out the last leg of the JettRide and celebrate their strength and endurance.

“The JettRiders get their inspiration from their brothers, friends, and cousins who have Duchenne and lack the muscle strength to ride a bike,” said Jett Foundation Founder and President Christine McSherry. “Jett Foundation provides the opportunity, but it is the riders who make the impact by challenging themselves and challenging Duchenne.”

Over the past ten JettRide tours, 110 young riders have cumulatively rode 128,000 miles­–enough miles to circle the Earth over five times­–and raised nearly $300,000 toward Jett Foundation’s education and direct service programs for patients and families, advocacy work for policies that expedite drug development, and support of Duchenne research. To learn more about Duchenne or to get involved with the foundation, visit jettfoundation.org.

About Jett Foundation
Since 2001, Jett Foundation, a nonprofit located in Plymouth, MA, has worked to extend and enrich the lives of individuals affected by Duchenne muscular dystrophy and other neuromuscular disorders. It does this by partnering with families impacted by Duchenne muscular dystrophy through empowering educational programming, transformational direct service experiences, and by accelerating development of life-changing treatments. For more, visit www.jettfoundation.org.

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

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Competing for a Cause: Triathlon Team to Compete and Raise Funds for Jett Foundation Alongside Local Man with Duchenne Muscular Dystrophy

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PRESS RELEASE: COHASSET, MA - June 1, 2018 - Jett Foundation’s Tri4Jett triathlon team members will be competing in the Cohasset Triathlon on June 24 with their hero and namesake, Jett McSherry, a 22-year-old who has Duchenne muscular dystrophy. This is Tri4Jett’s sixth year competing in the Cohasset Triathlon and raising funds for Jett Foundation, and McSherry’s second year. 
 
At age five, McSherry was diagnosed with Duchenne, a rare muscular deterioration disorder that increasingly limits muscle functionality. Having lost ability to walk and almost all muscle function, McSherry has been limited to a power chair since he was 12. However, teammates will help McSherry defy odds this June when he competes in the race for the second year in a row. 
 
“Jett and the families Jett Foundation works with inspire us through months of hard training. On race day, every step, stroke, and pedal is for Duchenne,” said Tri4Jett  team captain, Craig Martin. “To have Jett paving the way for us again this year means more than anything to this team and it is going to be a huge source of motivation for us to cross the finish line.”
 
The Tri4Jett team is looking for volunteers and participants to join them on June 24 to help with transitions, encouragement, and fundraising. The team is thrilled to have their hero and inspiration training and participating with them again this year. McSherry’s Bridgewater State University roommate and close friend, Josh Dyer, will be alongside McSherry every step, pedal and stroke of the way. 
 
“The moment Jett crossed the finish line last year flocked on either side by his teammates was incredible. The entire crowd of supporters roared in triumph for their accomplishment,” said Christine McSherry, Jett’s mother and President of Jett Foundation, founded and named after her son to help all those affected by Duchenne. “By racing a second year in a row, Jett is proving that Duchenne won’t define him or stop him.”
 
Through the help of friends and the community, each teammate, including Jett, has been raising funds to participate in the triathlon. The team’s major sponsors include Perky Jerky®The Goodale Company, Inc. Insurance, and Shea Concrete Products. To join the Tri4Jett team, please visit https://www.jettfoundation.org/tri4jett-2018/. To learn more and to donate to the Tri4Jett team, please visit https://www.firstgiving.com/event/11421/tri-for-jett-2018

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 one in every 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, a nonprofit located in Plymouth, MA, has worked to extend and enrich the lives of individuals affected by Duchenne muscular dystrophy and other neuromuscular disorders. It does this by partnering with families impacted by Duchenne muscular dystrophy through empowering educational programming, transformational direct service experiences, and by accelerating development of life-changing treatments. For more, visit www.jettfoundation.org.

Media Contact for Jett Foundation
Gabriella Diniz, gabriella@jettfoundation.org

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Jett Foundation Announces Partnership with Perky Jerky®

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PLYMOUTH, MA, May 31, 2018-- Jett Foundation, a nonprofit organization dedicated to fighting Duchenne muscular dystrophy, is pleased to announce its partnership with Perky Jerky® to sponsor Jett Foundation’s athletic fundraising initiative, Go! for Duchenne.

Duchenne muscular dystrophy is the most common fatal genetic disorder diagnosed in childhood, affecting approximately one in every 3,500 boys. Go! for Duchenne is comprised of multiple athletic teams across the country. Participants walk, run, ride, and swim for Duchenne at athletic events to raise funds and awareness for Duchenne and Jett Foundation’s advocacy, research, educational and direct service programming efforts.

Perky Jerky is sponsoring Go! for Duchenne teams in four upcoming events:

“Perky Jerky is dedicated to fighting Duchenne muscular dystrophy (DMD)," said Brian Levin, CEO of Perky Jerky and parent of a child with Duchenne. "We are thrilled to support our partners and friends at Jett Foundation who are providing transformational programs for children and families affected by DMD, as well as advocating tirelessly for safe and effective therapies that improve quality of life for our community. We hope that our support of their Go! For Duchenne teams this year will help raise awareness and encourage others to participate. Together we can end this terrible disease."

"Perky Jerky and the Levins have supported Jett Foundation’s efforts for many years, and we're so thrilled to have the opportunity to partner with them this year in such a significant and impactful way," said Christine McSherry, Founder and President of Jett Foundation. "This is an exciting and hopeful time for both our Duchenne community and Jett Foundation. This support allows us to improve and expand our offering of programs and supportive services while continuing to advocate for effective treatments and quality care for the young people we serve."

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 one in every 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 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.

Media Contact for Jett Foundation
Gabriella Diniz, gabriella@jettfoundation.org

Riding for Duchenne at the Rodman Ride for Kids

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We are proud to announce that Jett Foundation is now an affiliate agency of Rodman for Kids.

Along with 50 other nonprofit agencies that share a mission of helping underserved kids in the Greater Boston area, Jett Foundation's Go! for Duchenne team will be participating in its first ever Rodman Ride for Kids on September 22, 2018 in Foxboro, MA.

The Rodman Ride is the #1 single-day athletic fundraiser in the nation supporting at-risk kids and all expenses for the event are underwritten. This means that 100% of funds raised by our riders go directly to supporting our young people and families.

Rodman for Kids is an umbrella matching gift charity raising funds for youth-focused social service organizations that support at-risk kids in Massachusetts. Rodman’s mission is to have every child in our community live as we would want our own kids to live. Jett Foundation is committed to supporting young people affected by Duchenne by providing education, programs, adaptive equipment and the support needed to live full lives. Partnering with Rodman for Kids enables us to bring together the families and community we serve for an exciting day of cycling and fun while simultaneously supporting the work that we do.

We are determined to start off our first year as an affiliate agency strong with a 2018 Rodman Ride fundraising goal of $30,000! Interested in riding 25, 50 or 100 miles on September 22 with Go! for Duchenne? Email Amy at amy@jettfoundation.org and let her know!

Join us by riding, sponsoring, or supporting today!


 
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Let's Go! Get Active for Duchenne with Us

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We are excited to announce a new name and logo for our athletic fundraising teams: Go! for Duchenne.

Go! for Duchenne is comprised of multiple athletic teams who are dedicated to activating their muscles to raise funds and awareness for Duchenne and Jett Foundation’s advocacy, research, educational and direct service programming efforts. Participants walk, run, ride, and swim for Duchenne at athletic events like triathlons, road races, bike rides, and more.

Go! for Duchenne is kicking off strong, with participation across New England in four major events so far this year:

You can Go! for Duchenne, too. Visit www.jettfoundation.org/goforduchenne to learn more about how you can get involved in one of our athletic fundraisers this year or email maura@jettfoundation.org for more information.

A Gal Like No Other: An Interview with Gals for Cal's Cindy Quitzau

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This year marks the 10th anniversary of the Gals for Cal triathlon team spearheaded by the amazing Cindy Quitzau. Cindy is mom to triplets Calvin, Jake, and Emily. Cal is impacted by Duchenne muscular dystrophy and his brother, Jakey, has both autism and Down Syndrome.  

In honor of Mother’s Day, we interviewed Cindy to hear just what keeps her going each day and what motivates her to continue to support Jett Foundation through Gals for Cal each and every year.

Q: How did you first hear about Jett Foundation? Why do you continue to support and stay involved?

Cindy: I first heard about Jett Foundation from another mom of a child with Duchenne, who quickly became a fast friend of mine. We were at an event or conference and she had asked if I had met Christine McSherry. I hadn’t yet so when we got home I connected with her.

Initially, I really wanted to start something local because I felt that my network would be able to get around that if it was local and more intimate. So I started working with Christine. My son was newly diagnosed, I didn’t know what I was getting into on the road ahead but she already had so much more experience than I did and was just very supportive and helpful. I have to say she just made it very easy for me to support and want to get involved. She listen to my ideas, as crazy as they were.

Once we started sharing Cal’s diagnosis, I had friends come to me who wanted to do something to support him. It took us the better part of a year to come clean with all our family and friends about Cal’s diagnosis. These were the people who love our children like their own, so it took us quite a while to finally get the word out. When we did, we had friends that were calling and they told me they wanted to do a triathlon. I belly-laughed; the only experience I had with a triathlon was watching Iron Man on tv. But they talked me through it and I realized it was something I could handle. That’s how Gals for Cal started. We pulled together a team of 20 and the rest is sort of history.

We’ve empowered women to do things they never thought about doing before and to do it for something bigger than themselves.

Q: You are constantly giving of yourself, to your family, your children, to Jett Foundation and your community. What is your favorite thing to do to take care of yourself through that? How do you recenter yourself?

Cindy: Like so many moms, we do what we have to do because we have to do it. There’s no time to really sit and feel sorry for yourself. I think it really is girlfriend time. I always try to really make it a point to make time for my girlfriends. My favorite thing to do is to get away with my girlfriends and get some girl time. We might not be sitting around talking about my problems, but we might be talking about everyone’s problems. Or no problems at all, just enjoying fun and being social together.

 

We’ve empowered women to do things they never thought about doing before and to do it for something bigger than themselves.
 

Q: What gives you strength and fuels you to keep going?

Cindy: My children. At the end of the day, I want them to have the best life they can have. And I think that they are really what my focus is. When we meet small milestones, it's a big deal. When any of them do something, it's a big deal for us. So I would say they are what keeps me going. They are the reason I carry on. They are the reason I do what I do. Its for them and for their future.
 

Q: Who inspires you? Who is your hero?

Cindy: My mom. She recently passed away and has very much been at the forefront of my mind lately. My mom has always inspired me because she lost both of her own parents when she fourteen within the same year. She was an only child and was then raised by her aunt and uncle. Throughout my whole life, my mom, ever year that she lived beyond the age of her parents, she would recognize how lucky and blessed she was because she lost them so young. She really instilled that sense of family in us and she did a really great job raising my brothers and I. And a lot of who she was was based on the loses in her life.

Just a couple days before she passed away, I was so lucky to have time with her, and had the opportunity to share with her the things that I appreciated most and wanted to thank her. I felt very compelled to make sure she knew certain things before she left us. She was kind of unresponsive the last few days but even though she was pretty quiet, we would all just carry on conversations in the room with her. I told her that she was such a strong woman for us, and that I really believe that she passed that strength onto me and taught me how persevere through adversity and challenges. When I said that she suddenly just bursted out as a clear as a bell, with every ounce of energy that she had left, “Stay strong.” And then she just sort of closed her eyes and laid back to rest on her side again like she had been before. It was such a powerful moment for me.

She is my hero. It’s really hard to pick one, I do have many other heroes, but mostly my mom, my children, and my husband for putting up with us all.

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Q: What advice do you have for moms who may be going through similar experiences in their lives?

Cindy: Connect. Connect with other families who are going through similar experiences. I really think that by serving others and by doing whatever you can, by getting involved, helps you in turn. The friendship we made, and Cal made, by connecting early on have been very near and dear to our hearts. Many of them have since gotten involved in our triathlon team or in other ways. Find children in the same age range when they are young because it does get hard. Connect with others, don’t hide, as hard as it is. Get out there and keep your sense of humor, that definitely does help.

Q: How have your experiences changed you?

Cindy: They have made me a better person. I am a lot more patient and understanding of other. It has shown me I never want other people to struggle with some of the struggles that my families have faced. I feel like it made me grow up. Put on my big girl pants and stop thinking about myself. Think instead about what I can do and how I can help. I honestly don’t want to see others going through what we have gone through, living with Duchenne, living with Down syndrome and autism. It has challenged us all. And it has made us all better people. Even Cal, it is remarkable how positive he is an his outlook. He doesn’t see himself as disabled and that helps change our perspectives, as well.

Q: What’s the hardest thing about being a mom? What’s the best thing?

Cindy: I think balance is definitely the hardest thing of being a mom. Balancing everything and everyone. It's always hardest trying to make time for yourself because we are so busy. I have been super lucky to have the best girlfriends in the whole wide world. I’m so lucky to have them and friends of friends who support us.

The best thing everyday is waking up and seeing smiles on faces. I’m in the teenage years so it's really hard to get those, there’s lots of whining and complaining that comes along with it but I have to tell you our best moments are when we are being silly and happy together. We don’t have to be doing much to enjoy that time, but just celebrating those little things are the best.

Cindy and her team of gals are looking for more women to join this year's Gals for Cal team on September 9th at the Hopkinton Title 9 Tri (for women only.) All levels of athletic ability are welcome to join their team of strong, empowered women challenging Duchenne together. Visit https://www.jettfoundation.org/gals-for-cal-dudes-against-duchenne/ to join the gals today.