DECEMBER, 2016
Families who raised money for studies on two NBIA disorders, BPAN and FAHN, will soon see a focus on the diseases when the NBIA Disorders Association solicits a new round of study proposals.
Within the next few months, the association expects to specifically ask for grant applications that address research priorities for BPAN and FAHN.
The association’s Scientific & Medical Advisory Board is in the process of setting research priorities for Beta-propeller Protein-Associated Neurodegeneration (BPAN) and Fatty-Acid Hydroxylase-associated Neurodegeneration (FAHN). Those priorities will be used to guide research proposal requests, and the grants will be awarded as soon as possible in 2017.
The board plans to award seed funding grants of $45,000 each so that researchers can gather enough data to pursue larger grants later.
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 in our research fund. As a result, our 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.
Researchers in our database will be notified when the request for grant applications go out for BPAN and FAHN. We also will post the information on our website. Any researchers who wish to be added to our database to receive notice of grant funding opportunities may send an email address and name to pwood@NBIAdisorders.org.
