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;

Thank you for your interest in this important research! 

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.

Amy Walsh.jpg

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.

Shannon Healey.jpg

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.”

Gregory Boys.jpg

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:

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.

Media Contact for Jett Foundation
Gabriella Diniz,


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


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 and to learn more about Duchenne and Jett Foundation, visit

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

Media Contact for Jett Foundation
Gabriella Diniz,, 774-226-3694

Team Jett Tuesday: Gabriella Costa

Gabriella Costa is Jett Foundation’s Marketing and Communications Manager. Gabriella studied graphic design but has always had a passion for social justice and nonprofit work. She volunteered with advocacy programs in college and within her church and community. She began working for Jett Foundation in October 2017, drawn to Christine’s captivating passion and energy. Gabriella remains inspired by the stories of the families Jett Foundation partners with.

Outside of work, Gabriella is passionate about art and singing, loves party planning and taking trips to Newport, Rhode Island. She also just recently got married and is enjoying spending time with her new husband and their families.

8 Helpful College Tips for New Students

Everybody knows that once they graduate from high school, college is most likely going to be their next step. Unfortunately, that next step might be more difficult than you think, especially if you have a condition that keeps you from doing certain tasks that may seem easy for others. These eight helpful tips should be everything you need to get started with your college life, which may be challenging to deal with right at the beginning of your journey.


Tip #1: Get Started

Getting started is always the first thing you need to do in order to decide the college life that is right for you. You might want to begin this part of the process by asking yourself the following questions:

  1. Which colleges should I apply to?

  2. How do I know which classes to sign up for?

  3. What kinds of services are necessary for me to be successful?

Not only is applying for a college that will accept you based on how well you did in high school important, but so is making sure you apply for the right classes and understanding what services you may need once you actually start getting enrolled.

An example of this might be trying to find out if the library is close by or if the classrooms have desks high and wide enough to accommodate your wheelchair.

Tip #2: Decide Your Future

You can always change your major later, but mostly everyone will decide on what they want to do after college right when they enroll. For example, if you wanted to be a writer you would choose journalism or communications as your major.

In other words, this means that right when you start enrolling in whatever college you choose to go to… it is important to think about what your future will hold after college.

Tip #3: Disclose Your Condition

People with disabilities are sometimes misunderstood by people who have no idea of what daily obstacles they may be going through.

One of the first things to do after enrolling would be to tell the right people about what your disability is and what challenges they may bring into your college life.

Most schools will provide certain services to you depending on your needs, but they will not do it unless you tell them about your condition.

Tip #4: Pick Your Classes

Picking the right classes is really important, especially when you are going to college for the first time.

Sometimes it is best to pick the classes that are the most basic or some of the ones that would be easiest for you at the start.

Failing classes in college is not fun and it is something you can avoid by getting yourself on the right track, so you can get used to going to college before diving right into the hard stuff.

A lot of thinking needs to be done before deciding what classes you are going to take.

Tip #5: Find Time to Study

Finding time to study is always important and you will want to work with a schedule that is best for you, depending on how many classes you are going to take.

Some classes may not involve so much studying, but it is always important to prepare for exams in some kind of way whether it’s skimming through PowerPoint slides or utilizing whatever material your professor provides you with.

And if you can’t decide how much study time needs to be put aside for a certain class, asking someone to help make you a schedule is usually a wise decision.

Tip #6: Take Notes

Taking notes might be hard for you depending on the extent of your disability, so an alternative to writing notes may be finding out if there is a person that the college can provide to take notes for you.

Another option would be to ask somebody you know in your class to take notes for you or ask your professor if he or she can email you the PowerPoint slides that are shown by them during lectures.

Taking notes will probably not be easy but asking somebody to help you with this if you are unable to do it on your own should be a priority.

Tip #7: Stay Organized


You can’t really tell anybody how to stay organized, because everybody has their own way of being organized.

But if you are not organized in college, you are going to have a lot of problems. Staying organized should include making sure you have the right materials for work that may need to be done in class such as notebooks, pencils, highlighters and other things like that.

It should also include making sure you keep track of due dates for your assignments and knowing when you need to turn things in.

Setting reminders on your phone is a great way to help you stay organized and it is easy to do.

And if you do not know how to set reminders, you can look it up online or ask a friend or family member that also has them on their phone to help you with it.

Staying organized is always important and should be your top priority.

Tip #8 Going Digital

The future is upon us, so it is only fair that we start embracing it.

Some people that have disabilities might have a hard time tackling whatever college throws at them every single day. This is why having a computer to help solve some of your problems for you is a great choice.

Taking notes would be a great example because most people with a disability would probably find it easier to type rather than write. Your computer can also keep you organized, so be sure to use any useful apps that could make your college life easier such as word processors, calendars and other helpful tools.

And the great thing about having a computer is that there will always be one that is perfect for your needs.

So, if you want something affordable, it is always easy to find the right laptop or tablet for you or if you need to find devices that are light if you have trouble carrying around heavy items, you can also do that.

Shopping for a computer is easy because you will always find whatever you are looking for based on whatever your criteria may be. You can also find apps on your smartphone to help with your college needs are and doing that can sometimes be really helpful

Any kind of technology that will make your college life easier is always worth taking advantage of.

Team Jett Tuesday: Jordan McSherry

Jordan McSherry is Jett Foundation’s Director of Advocacy and Education. Jordan is Jett’s oldest sister and like her mom, Jordan has dedicated herself to helping Jett and other people affected by Duchenne.


Jordan’s role at Jett Foundation allows her to continue meeting more families and help them get help. Jordan also serves as a liaison between Jett Foundation and our industry partners, bringing us and our audience the latest pharmaceutical updates and other Duchenne news.