PVNH Support & Awareness
PVNH affected families around the world need your help!
Together with Global Genes and Festival of Children Foundation, we wish to raise $50,000 to reach our Possible Dream to UNITE & RESEARCH to:
- Host our 4th international conference to unite and educate families and medical professionals about PVNH and other neuronal heterotopia disorders
- Grant funds to PVNH researchers for much needed research that will enable families to access better diagnosis and care, and ultimately, a cure.
PVNH Support & Awareness is an international nonprofit organization created in memory of Ella Dupont Bedassie who died on March 27th, 2009, then undiagnosed, from PVNH caused by a FLNA mutation, at the age of 7 months and 20 days. We currently supports more than 400 families in 32 countries. All have a family member affected by a neuronal heterotopia disorder. Most have children affected by PVNH (Periventricular Nodular Heterotopia) and there are also some in our community affected by SBH (Subcortical Band Heterotopia). Most do not know the genetic cause of the disorder (there are many genes and chromosomal problems that can be at cause and insurance companies often deny testing). Up to 90% of the affected individuals suffer from sometimes delibitating seizures. Some have cardiovascular problems, others also have a lung disorder that may require them to receive a double lung tranplant. Some have cogntive problems, others have motor impairments. The spectrum of medical issues caused by PVNH and SBH is very large and can affect multiple organs.
All deserve answers and access to better care! And by jumping on the carousel with us, you can help our team reach our goal and make it happen.
Let's break the ceiling and touch the clouds together. We invite you to make a gift now and/or to join our team now.
Every gift counts. Your support is deeply appreciated. Together, we can make our Dream a reality. Together, PVNH and SBH families are no longer alone.
Ella's mom, PVNH Support & Awareness Founder & Team Captain
Festival of Children Foundation is the fiscal sponsor of this event.