My Nonprofit Reviews

When my sister was diagnosed with BPAN, we felt alone and powerless.
As we looked for answers, we came across Jennifer Sanchez’s beautiful family, and that encouraged me to look further. That's how we found the NBIA Disorders Association (NBIA DA). Jennifer, is a board member of this amazing association.
We entered their Facebook BPAN group, where we found great insight from other parents and family members of BPAN, through their website, we came across their newsletter and other resources that were not only helpful but enriching and worth sending my sister’s doctors. Our first connection was through their virtual international family meetups, where Amber Denton the current NBIA president was kind, empathetic and supportive, as well as Jennifer, they allowed us to share our stories, heard us and comforted us through our pain, and gave us some needed answers and knowledge, but most importantly, made us realize we were now part of something, a community that they have built from the ground up and where everyone is welcomed.
We heard about the family conference that they organize every 2 years, and as much as we wanted to be there because of the medical expenses we have with my sister, we simply weren’t able to.
Until Patricia Wood the founder of the NBIA DA, like a real-life fairy godmother, granted us a scholarship.
Being at that conference changed our lives and it truly felt like a dream come true. We felt sheltered during the hardest, cruelest storm and welcomed with open arms into the
community. We met the most amazing people.
I remember my mom coming out of the first session, and as soon as she saw Jennifer Sanchez approaching her, they hugged, and my mom fell apart, crying in her arms. I felt like I was witnessing two sisters talking in their own language since my mom didn't need to say a word, and I knew Jennifer understood it and held her tight.
Seeing my mother find this comfort and these connections, as well as seeing the love and passion that the association has, along with their commitment to the community, and meeting researchers, parents, siblings and NBIA individuals, gave me hope.
We were not alone anymore; we were home and that is the beauty and the power of this amazing association. The NBIA DA changed our lives for the better and I am so grateful for their efforts and support.