Community Ambassadors Making An Impact at Rare Disease Day

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On Thursday, February 28, we had the privilege of hosting our annual Rare Disease Day Luncheon at the Omni Parker House in Boston.

This year, our event’s focus was to highlight our rapidly growing Jett Foundation Community Ambassador program and all the work each volunteer ambassador has put in this year in support of our work and our community. We wanted to provide an opportunity to bridge the gap and personally introduce our industry partners to the parents, grandparents, and siblings who serve as liaisons for Jett Foundation and advocates for the Duchenne muscular dystrophy community.

Ten of our amazing community ambassadors were able to join us for a panel and luncheon to share their stories. Our brave panel of ambassadors included Jillian Moore, Perlita Hains, and Laura McRitchie who spoke of their experiences with clinical trials, struggles post-diagnosis, and the burden as a mother and caregiver to a child with Duchenne.

Perlita Hains shared her story of watching her son, Levi, completely lose his mobility a year ago. Levi, 12 years old, is in the transitional stage of the disease and has recently lost his ability to walk. Perlita described the torment of watching her 12 year old son lose his ability to walk and how it has fueled her passion for advocacy. She summed up her motivation saying, “If not now, when? If not us, who?”

If not now, when? If not us, who?
— Perlita Hains, Levi's mom

Difficult stories like Perlita’s provided those of us in the room with the reality of what it’s like caring for a young man with Duchenne. These unique anecdotes put the gravity of the situation into perspective.

After the panel’s presentation, the luncheon broke into a roundtable discussion with conversations exploring the families’ role in educating their child’s peers about their disease, the discrepancy of the cost/quality of care from state to state, and the importance of teaching principles of empathy at a young age.

We would like to thank all our attendees, and especially our Community Ambassadors for making Rare Disease Day a truly impactful experience. Jillian Moore, Diana Johnson, Amanda Guth, Emily Houston, Perlita Hains, Laura McRitchie, Blake Barkoskie, Staci DiRocco, Mari Sanders, and Karen Stahler: thank you for spending the day with us and for all you do in our community!

Making a Difference in Duchenne on #GivingTuesday

There are so many ways to give back during the holiday season. We hope you’ll consider giving to Jett Foundation’s Annual Appeal and making a difference in our Duchenne community on #GivingTuesday, Tuesday, November 27th, 2018! Here are a few simple ways you can make a BIG impact on our programs and in our community.

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

Our Jetting for Success program, aimed at supporting young people as they pursue a college education and explore careers, is looking for new mentors. Learn more and apply to volunteer at www.jettfoundation.org/jetting-for-success.

3. Start a Facebook fundraiser

Consider organizing a Facebook fundraiser with Jett Foundation as your beneficiary. Follow this link, and you will be able to easily create a fundraiser on our behalf. Share it with you supporters and encourage them to help you raise money for Jett Foundation.

4. Join a Go! For Duchenne athletic team

By participating in one of our many athletic teams, you are making a difference in Duchenne! Whether you get involved in a triathlon team, cycling team, or start something on your own, you’ll be making an impact while you move. Visit www.jettfoundation.org/go for more information on how to get involved.

5. Shop on Amazon Smile

While shopping for family and friends this year, consider shopping on Amazon Smile with Jett Foundation selected as your nonprofit of choice. While you shop, Amazon will donate back to Jett Foundation. Visit Smile.Amazon.com to get shopping now!

6. Share your Jett Foundation story

One of our favorite ways for our supporters and families to share with us this giving season is through their Jett Foundation stories. Each inspiring story of strength and courage is a gift to us; from the families we serve to the supporters who make it all possible, we hope you’ll send us a note sharing exactly why you believe in the work we do at Jett Foundation. Submit your testimonial to info@jettfoundation.org or send us a Facebook message!

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

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.”