Family Advocacy Day

John Ryan a Champion for New Jersey Children Specialized Hospital

Our family is going to Washington DC to speak to congress members and share our journey. We are so excited to join, Children's Specialized Hospital, in advocating for affordable healthcare and share our journey with GATAD2B. Our goal is to support our hospital and represent the result of all the hard work and support they give to our family and many others in our community. Affordable healthcare is so crucial in our growing disability community. We know the many frustrations that families face when looking to provide a good healthcare team for their child.

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GATAD2B-Associated Neurodevelopmental Disorder (GAND) is a neurodevelopmental disorder that is very rare, there are currently only 310 confirmed cases. Gand causes developmental delays, feeding issues, low muscle tone, poor motor skills, cognitive disabilities and apraxia of speech.

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It is important to us to also share our rare journey with lawmakers as we seek more support for research and awareness for the rare genetics community. GATAD2B is just one of the many rare disorders that is only funded by patients and families. This makes it very difficult for our doctors and teams to continue working on projects that could help our children. We will be sharing more of our trip via Instagram, join us here.

For more information on the Children's Hospital Association's Family Advocacy Day and to read John Ryan's story, click here.