So many people, groups and organizations helped Addi thrive and live a Big Beautiful Life.
Join us in learning, sharing, advocating and helping other navigate the hard stuff.
Our volunteer firefighters run to help us during our worst moments and put their lives on the line to protect our communities, but they are not getting the proper support and resources they need.
It's time for change.
Addi is a patient of NIH’s Undiagnosed Diseases Program (UDP) in Bethesda, MD. The UDP focuses on a VERY limited number of the most puzzling medical cases which are likely a new disorder not previously diagnosed in any patient. They strive to provide answers and treatment ideas to patients with mysterious conditions which have long eluded diagnosis and to advance medical knowledge about new, rare and common diseases. UDP is now part of the broader Undiagnosed Disease Network (UDN), which offers a similar diagnostic approach to a larger population of undiagnosed patients at 12 clinic centers across the country (nearly 30% of UDN patients now have diagnosis).
Addi taught us so much about navigating health & care systems, resources as well as complex medical issues. We routinely act as a resource to others by sharing our knowledge when asked and will be sharing some general information, resources and ideas here in the future.
We will support educators, critically pediatric patients and their families by bringing medical and educational experts together with bereaved families to develop a national standard for educational programming & curriculum as well as social/emotional supports for educators who have students in a setting of critical illness, hospice and bereavement.