Our Ambassadors

Patients are at the heart of everything we do. Our ambassadors' stories highlight why mission is so important.

Our hope is to prevent crippling disabilities, reduce pain and save lives by early diagnosis & treatment of EDS, HSD, and related conditions.

Suzanne - Ehlers Danlos Syndrome (EDS)

Our rare hope is a cure for Friedreich's Ataxia...and to make the rare walk easier for those on this road now, and in the future.

Marissa - Friedreich's Ataxia

My rare hope is the day when there will be one place where AJ can go and all of his medical team can come together at once to discuss treatment and customized medical care coordination. My rare hope is that a cure can be found.

AJ - 5q14.3 Chromosome Deletion Syndrome and MEF2C Syndrome (MHS)

Lots of things are hard for Theo but not making people smile, that isn't hard for him, he makes everyone smile.

Theo - Rubinstein Taybi

If love was enough, we would have cured CDKL5 by now. But never to give up: Hope - Love - Cure

Aiyana - CDKL5

Our rare goal is to appreciate the important things in life - love, family, and every day we have with a clean bill of health.

Brooklynn - PTEN Hamartoma Tumor Syndrome

Our rare life is beautifully broken.

Florence - RERE Syndrome

We know the truth: No single cure was born before millions of wishes for it came to life. We are Pompe Strong!

Gabriel - Pompe Disease

Our family chooses to focus on making the most of each day; fighting for better treatment for those effected by rare disease, and looking forward to heaven when they can all run and not fall down.

Josiah - Friedreich's Ataxia

When we can no longer change a situation, we are challenged to change ourselves - Viktor Fankl

GM1 Gangliosidosis

Tricia is an amazing young woman with a very complex medical history. She has not been able to eat real food for more than 8 years and is fed through her arteries. Tricia attends the University of NE and is studying to be a doctor in hopes of finding cures for rare diseases someday!

Tricia - Mitochondrial Dysfunction, Intestinal Failure, Myopathic Pseudo Obstruction, Anemia of Chronic Disease, Mast Cell Activation Syndrome