My Nonprofit Reviews

My daughter was diagnosed with an unknown NBIA disorder in 2011.
I did internet searches looking for information. I found the NBIA Disorder Association's website on the second page of search results. The President at that time was Patricia Woods, who I contacted. The Association has help with information that has given my daughter a better life then she otherwise would have.
In March 2012, my family went to the NBIA conference in Missouri that was sponsored by the Association. While there, my daughter and other donated blood for research in locating the gene that caused her development delay. The gene was discovered later that year. After genetic testing, my daughter tested positive for the WDR45 that was discovered, now known as BPAN. The research was was made possible from grants the NBIS Disorder Association.
My daughter was 30 years old in 2012. For 30 years, we had no reason or understanding of my daughter's decline. The NBIA Disorder Association helped my family with understanding and treatment options for her disorder.