RESEARCH & FUNDRAISING
NBIA is complex and research funding is limited
The exact location of the abnormal iron accumulation in the basal ganglia (which has five different regions) and the specific cause of that accumulation is different for each of the 10 genetic disorders. This means that finding a cure for each type of NBIA will need different funding and research. Current research and funding has been focused on PKAN because it accounts for 35-50% of the cases of NBIA. There currently are several clinical trials for PKAN.
Parents have been key in raising funds for the other NBIA disorders.
The next round of NBIA research grants to focus on BPAN and FAHN
The campaign to raise donations for FAHN, “We Will Never Give Up Hope,” was spearheaded by Gina Engblom of East Islip, N.Y. Her 16-year-old son, Kyle, has FAHN. Engblom used our FirstGiving platform to accept donations earmarked for FAHN research, in addition to receiving donations from friends and supporters who held community fundraisers. It took a little over a year to raise the $45,000 for the grant.
Last year, BPAN families raised over $40,000 in just five weeks to add to money to their research fund. As a result, their organization financed a two-year, $67,760 research grant to create a BPAN mouse model.
More recently, Jennifer and Brian Greene of Porter Ranch, Calif., and Krystal Bettega of Joliet, Ill., got busy raising money for a new BPAN grant. Both families have a child that was newly diagnosed with BPAN. Their efforts, combined with $7,000 from previous fundraising, is making the upcoming $45,000 grant award possible.