Let us navigate with you.

Jett Foundation knows and understands that getting a diagnosis like Duchenne is far from easy. We have created a packet for families on this journey – through its highs and lows.

Welcome Packet

We invite all in the community to request our Welcome Packet, whether a newly diagnosed family, clinician, industry partner, family member, or friend.

We hope the materials within our Welcome Packet will help you gain a better understanding of Duchenne, Jett Foundation’s empowering programs, and supportive resources from our greater community.

Below are some of the things that you can expect to receive:

  • Jett Foundation Welcome Letter
    and Brochure
  • Support Letters from Community Ambassadors
  • List of Duchenne Certified Centers
  • Health Insurance Flight Plan
  • Clinical Trial Cheat Sheet
  • How to Teach a Teacher about Duchenne Toolkit
  • Top Things to Know in the Heart
  • Standards of Care for Duchenne

A Letter From Christine

The devastation that hits when your child, grandchild, sibling, niece, nephew, or classmate is diagnosed with a deadly, progressive, rare disease like Duchenne muscular dystrophy is paralyzing. I know because my family and I lived through it in 2001 when my then 5-year-old son, Jett, was diagnosed with Duchenne.

Like you, my family and I felt completely alone, terrified of what the future would hold for our little boy, and unsure of what our next move should be.

After spending over 20 years with individuals and families in the Duchenne community, and as a mom to an individual living with Duchenne, I want to put into words the few pieces of advice I can give you on how to best handle this diagnosis.

  1. I am very, very sorry that you are reading this. I am sorry that Duchenne has happened to your family and your child. Remember that your family and child did nothing to deserve this, and that you as a parent have done nothing wrong.
  2. Get genetic testing, get a copy of your child’s genetic report, know and understand your child’s genetic mutation. There is not a single piece of information that is more powerful and will have more impact on your child’s future than his or her genetic mutation. With several recently approved exon skipping therapies and many more in clinical trials, knowing your child’s mutation may allow him or her access to a safe and effective therapy. There are also clinical trials that are enrolling patients with different genetic mutations, and trials that are non-mutation specific. If your insurance doesn’t cover genetic testing or you can’t find or understand your child’s genetic report, please go to Decode Duchenne for free genetic testing and to talk with a genetic counselor.
  3. With your genetic report in hand, make an appointment at one of the 28 Duchenne Certified Care Centers in the United States. These certified care centers are where you will find the top Duchenne experts in the field, and are sites for many of the Duchenne clinical trials your child may be eligible for.
  4. Take care of your child, your family, and yourself. My advice to parents is to put your child and his or her care first, then when you have made important medical decisions with the doctors concerning treatment and trial options, try to help the rest of the community.
  5. Remember that you are not alone. Welcome to the Duchenne community. Get connected on social media, learn about the different non-profit organizations and the services and programs that are available for families and patients affected by Duchenne, or contact one of Jett Foundation’s Community Ambassadors or join a Porch Nite support group to talk to another mom or dad of a child diagnosed with Duchenne.

You can and will survive this.

My Best, 

Jett’s mom, Jett Foundation Founder & Board Member

Christine McSherry posing with a child
Christine McSherry posing in a field

Quick Links

Use the resources below to learn more about genetics and information surrounding mutations and testing.

Clinical Trial Cheat Sheet

Our goal at Jett Foundation is to empower patients and families with the knowledge needed to be their own best advocates, spread awareness about Duchenne, and help accelerate research and development.

The GeneTests

The Genetic Testing Registry (GTR®) provides a central location for voluntary submission of genetic test information by providers.

Genetics Home Reference

Find consumer-friendly information about the effects of genetic variation on human health.

Genetics Counseling and Information for Patients

This resource is specifically for resources related to NORD Member Qualifications.

The Talking Glossary of Genetics Terms

The National Human Genome Research Institute (NHGRI) has launched an online multimedia glossary to help people better understand genetic terms and concepts associated with many of the recent advances in genetics.

Latest Duchenne News

April 1, 2024
Pfizer launches Duchenne caregiver education website.
March 22, 2024
Jett Foundation is thrilled to share that the U.S. Food and Drug Administration (FDA) has approved Duvyzat (givinostat) to treat children and adolescents with Duchenne muscular dystrophy (DMD).  Please read...
March 19, 2024
PTC plans to re-submit an NDA for Translarna™ for the treatment of nonsense mutation Duchenne muscular dystrophy.

Experience the magic this summer!

How is the rare disease community accomplishing goals?

Tune in on February 29 to hear from our panel and moderators on how they are accomplishing goals and living life to the fullest!

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