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.
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:
The devastation that hits when your child, your grandchild, sibling, your 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 16 years counseling and assisting newly diagnosed families as the executive director of Jett Foundation and more importantly a fellow mom, I want to put into words the few pieces of advice I can give you on how to best handle this diagnosis.
You can and will survive this.
Jett’s mom, Jett Foundation Founder & Board Member
Use the resources below to learn more about genetics and information surrounding mutations and testing.
This resource is specifically for resources related to NORD Member Qualifications.