Team Hudson's Hope
Join our team and help us support Nationwide Children's Hospital- Prader Willi Clinic.
Hudson and his PWS warriors rely on NCH PWS Clinic for wholistic care. There is a muti-disciplinary approach of Endrocrinology, Genetics, Neurology, Psychology, Genetic Counseling, Dieticians, Nursing staff, Case Managers, Social Workers and affiliated specialists for ENTs, Orthopedics, Physicial, Occupational and Speech Therapists and more!
You can imagine its not easy for all these specialists to assemble, maintain and continuing to grow their knowledge, awareness and plans. Our goal is to support the clinic that we at minimum visit 4x a year for 5 hours each visit, plus our Nursing staff fights hard for our specialized medicines (which if out of pocket would be $40,000-$60,000 per year!) This team also needs funding to travel to the PWS affiliated conferences and support their continuing education.
In 2016, we were able to support 2 staff to attend the upcoming Prader Willi Syndrome Association USA conference. We are also trying to support more collaboration within the research (which Hudson was apart of to help find ways to identify PWS as early as possible)
Want to know more about Prader Willi Syndrome?
Basically Hudson is missing some of his dad's copy of Chromosome 15. He actually has 2 of his Mom's Chromosome 15. In that important Chromosome is a lot of important metabolic and endocrine genetic material. Hudson will not grow out of these, but we all work tirelessly to ensure he can keep up! He has low muscle tone (affects ability to move and talk and all body functions. Swallowing, coughing, eating, walking, and more.) He also has a very low metabolism, so we are very careful with what he eats. He actually cannot eat high carbohydrates and we even limit fruit as his body cannot handle that much insulin from the sugar in high carb foods. One day he will start to get a false sense of starvation. Literally his body thinks he is starving. With low tone and low metabolism, this is very, very dangerous. We are changing the textbook description of this syndrome every day. With your help we can find a cure, treatment and ways to have a better life!
PLEASE JOIN US our fight to help Hudson and other warriors have the BEST LIFE EVER!
We are determined to make each step count by fundraising to cure, mend, comfort and save the estimated one million children who will walk through the hospital doors this year. Children from all 50 states and more than 30 countries. Your contribution helps kids everywhere through life-saving research and care.