Palm Family Receives Accessible Van Through Jett Giving Fund

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On Thursday, the Palm family in Pennsylvania got a new set of wheels: accessible wheels that is.

From doctors appointments to school activities and family adventures, transportation has always been a challenge for the Palm family. Brothers Ryan (13) and Jack (11) are both impacted by Duchenne muscular dystrophy and have transitioned into bulky power chairs.

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“We needed a vehicle that would fit two wheelchairs and a family of six. I have two other teenage children and one of our daughters is nonverbal autistic,” said Lisa Palm, Ryan and Jack’s mom. “It was impossible to go places as a family at one time because there was not enough room to fit safely in our old van.”

Before the arrival of their new van, the boys would be lifted up and out of their scooters and into the car. A hard and physically taxing task on both the parents and the boys. Their scooters would then need to be disassembled to fit into the back of the van… just to be reassembled again when they got to their destination.

With the help of their community, family, and friends, the Palms have fundraised for half of the cost of their van. Jett Foundation has come in to match their efforts through the Jett Giving Fund and the generosity of sponsors and donors to the fund.

“Duchenne has taken a huge emotional toll on the boys as they lose their independence and mobility,” said Palm. “This van is going to make a huge difference in our lives.”

To learn more about our Jett Giving Fund program, or to become a sponsor or donor, please visit www.jettfoundation.org/jett-giving-fund.

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Team Jett Tuesday: Danielle Edwards

Meet Danielle! Danielle is our Community Engagement Manager and an all-around awesome do-it-all team player in our office. You may know Danielle best from our Family Workshop series - she is the one behind the scenes coordinating each workshop to ensure families have the important resources they need as they fight Duchenne.

Danielle’s biggest inspirations to work hard every day are all her friends impacted by Duchenne and other neuromuscular disorders.

Most of all, her brother Tanner, fuels her passion for advocacy and programming. Tanner was diagnosed with Duchenne muscular dystrophy just before he turned four years old.

After Tanner was diagnosed, Danielle would help her mom plan fundraising runs, dinner benefits, and golf outings. She would actively involve herself by helping her mom create flyers, solicit businesses for auction items, and ask for sponsorships. Through these grassroots efforts, Danielle ultimately realized that she loved working for a cause greater than herself. In college, she interned at Make-A-Wish Foundation and had her first experience as a camp counselor at MDA camp. These opportunities led her to Jett Foundation, where everyday she fulfills her life’s passion: helping others.

“My friends and Tanner have taught me more about myself and life than I'd ever imagine at 25,” said Danielle. “I love them all dearly and couldn't picture my life and the future without them. They all deserve the world and SO much more. I won't stop until they do.”

In her spare time, Danielle enjoys Tuesday night trivia, intramural kickball, and hanging on M Street beach with her friends. She is a also homebody–spending much of her time traveling home to enjoy time with her family in New Jersey.

Team Jett Tuesday: Michelle Burt

A long time friend of Christine McSherry, Michelle Burt, our JettRide Coordinator, has been around since the beginning. She remembers talking to Christine about Jett’s diagnosis in the school cafeteria while the two were volunteering. She says that one of her biggest inspirations in her job is Christine and her dedication.

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Michelle isn’t one to sugar coat things, hence her close friends calling her “Curt Burt,” but she gets the job done and she does a great job at it. In her role as JettRide Coordinator, Michelle does everything from plotting the JettRide route and recruiting riders to bedazzling bicycles for the finish line parade.

Your Voice; Impact of DMD. A Qualitative Assessment of the Impact of DMD on the Lives of Families.

Dear DMD Community,

While there are a number of publications/guidance/consensus statements related to the diagnosis and management of Duchenne Muscular Dystrophy (DMD) from the point of view of the health-care providers, there is a need for more research to define the key aspects of life with DMD from the perspective of the patient and caregivers, using the patients’ own voice and description of life impact.

To that end, please participate in Your Voice; Impact of DMD.  A Qualitative Assessment of the Impact of DMD on the Lives of Families.  The objectives of this study include;

  • To improve the understanding of the treatment goals that a DMD patient or caregiver may be most interested in based on the severity of their disease

  • To collect evidence, in the patients’ own terms, of the functional burden and the self-identified treatment goals of Duchenne patients and caregivers from their perspective and use this evidence to help identify things important to Duchenne patients to measure in clinical trials.

  • To collect information that will be used to inform the selection of key concepts of interest and development of future clinical outcome measures, including observer reported outcomes/patient reported outcomes

The study is being conducted in individuals age of 11 years or older living with DMD as well as caregivers who have children under the age of 18. To qualify you must meet the following criteria;

  • Participant must have a confirmed diagnosis of DMD, or be the parent/legal guardian of a child with a confirmed diagnosis of DMD. Proof of diagnosis will be required

  • Resident of the U.S.

  • Able to read, write and communicate in English

  • Able to grant informed consent

  • Participant must be 11 years or older. Participants over the age of 18 years of age will provide informed consent. Parents/legal guardian of participants under the age of 18 will provide informed consent for their child. Participants under the age of 18 will provide informed assent.

  • Willing to participate in a one-hour telephone interview between now and January, 2019

  • Ability to view or receive a document from the interviewer before or during the interview (web browser, ability to receive a text, fax or document by mail)

During the interview participants will be asked key aspects of life with DMD, including things that each patient/parent wishes that they or their child could do, but cannot do because of DMD.  Participants will also be asked about how these issues impact their life or the life of their child.  Participants will be paid an honorarium of $100 (US dollars) at the completion of the interview.

To participate, please visit Your Voice: Impact of DMD RSVP.  If you are unable to reach the RSVP from this link, please copy and paste the following URL into your browser bar;

http://www.engagehealth.com/survey/TakeSurvey.aspx?SurveyID=984L694

Thank you for your interest in this important research! 

Sincerely,
Christine McSherry
Founder and President of Jett Foundation
Jett's Mom

Team Jett Tuesday: Amy Walsh

Amy Walsh has been a member of our team at Jett Foundation since 2017 and serves as our Director of Business Development. Amy says that the reason she does what she does is simple: the kids. She has watched the children she’s worked with over the last 10 years “grow and transform into courageous young adults” and that’s what keeps her doing her best work each day.

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When she’s not working, Amy enjoys reading, doing crafts with her daughter, spending time with the rest of her family and her dogs and drinking coffee with her friends. She aspires to live like her own mother, who knew how to juggle raising kids, volunteering and working.

Team Jett Tuesday: Shannon Healey

Shannon Healey, our Camp Promise Registrar, joined Jett Foundation in 2016. Shannon started doing nonprofit work and then switched to a 10 year stint in the corporate world. She was looking to switch back to nonprofit work because she wanted to do something that felt rewarding to her and she wanted to show her kids that helping others and contributing to the world is a terrific reward.

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Shannon says that she remains inspired to do her job every day by seeing people do things that they didn’t think were possible or overcoming their fears. She loves the focus on “firsts” at Camp Promise, whether it’s something like going zip lining or trying a new food. “Getting out there and experiencing life - all the small and big things- is really important to me and working here has only enhanced that.”

Jett Foundation Helps Ohio Family Purchase Accessible Van for Two Sons Living with Duchenne Muscular Dystrophy

Beverly, OH – September 10, 2018 - Jett Foundation, a non-profit organization dedicated to raising awareness and funds for Duchenne muscular dystrophy, is helping a family from Beverly, Ohio purchase an accessible van through their financial assistance program, Jett Giving Fund. Brothers Kyle, 21, and Travis Gregory, 17, both with Duchenne, and their parents, Tammy and Rusty Gregory, have raised half the funds needed for their $44,000 accessible van through their fundraising page. Jett Foundation is matching the remaining 50 percent to purchase the van for the family. Kyle, Travis, and their parents are set to receive their van on Thursday, September 13, 2018.

“This van will make it easier to haul around Kyle and Travis’s power chairs,” says Tammy Gregory, the boys’ mom. “At this point in the progression of the disease, Kyle relies on his power chair for long distances. Both of our boys are increasingly having trouble walking, can't climb stairs, and need help getting up off furniture.”

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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 know from personal experience that vans, scooters, rotating hospital beds, and stair lifts are vital to improving the quality of life of someone with Duchenne. I also know how incredibly expensive that equipment is, and how little health insurance actually covers,” says Christine McSherry, founder of Jett Foundation and mom of a 22-year-old with Duchenne. “We started Jett Giving Fund to try to make life-changing equipment just a little more obtainable for individuals affected by Duchenne.”

Launched last year, the 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: https://www.jettfoundation.org/jett-giving-fund/.

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 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

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Jett Foundation to Host Celebration of World Duchenne Awareness Day 2018 in Cambridge

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PLYMOUTH, MA – August 14, 2018 - Jett Foundation, a non-profit organization dedicated to raising awareness and funds for Duchenne muscular dystrophy, will celebrate World Duchenne Awareness Day (WDAD) on Friday, September 7. As a testament to the community’s unity and commitment to fighting the disease, the foundation will host its annual event at Cambridge’s Kimpton Hotel Marlowe. The event will be sponsored by community partners in the Duchenne space, including Capricor, Catabasis, JB’s Keys to DMD, Mobility Works, Pfizer, Santhera, Sarepta, Solid Biosciences, Summit, and Wave.

“Our community has accomplished so much together over the past year, we are excited to share in those successes but also to have important conversations about the challenges we still face,” said Christine McSherry, founder and President of Jett Foundation. “This year's WDAD theme is Standards of Care. Excellent care begins with education and continues with a commitment to ensuring access to care is guaranteed and research is supported.”

At the event, Jett Foundation will be hosting Dr. Brenda Wong as an honored guest to welcome her to the New England Duchenne community. Dr. Wong is the founding clinic director from the Duchenne Program at University of Massachusetts Medical: a new clinic dedicated to improving research and care outcomes for children and adults with Duchenne and Becker muscular dystrophies.

Joining as a guest speaker, Alan Chaulet, a 28-year-old Duchenne patient from Lexington, MA, will share his experiences with Duchenne and his work as vice president of the nonprofit All Wheels Up. The nonprofit works to fix a pressing problem for people who use wheelchairs: accessibility of airplanes. Also speaking is Jillian Moore. Jillian is mom to Aiden, a DMD patient, and will speak to the audience about her perspective as a parent.

As the evening unfolds, the city will show its solidarity with those who suffer from Duchenne as famous landmarks around Boston including Government Center and the Leonard P. Zakim Bunker Hill Memorial Bridge will light up in red in honor of the cause.  Red, often associated with the word “stop” represents the organization’s dedication to stopping Duchenne in its tracks.

World Duchenne Awareness Day in Cambridge is free of cost for families affected by Duchenne, as well as healthcare providers and academics. Tickets are limited. To register to attend the event, please visit www.jettfoundation.org/wdad and to learn more about Duchenne and Jett Foundation, visit https://www.jettfoundation.org.

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, 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, 774-226-3694