Collaborations will lead to 5 NBIA grant awards in early 2019

September 2018

The NBIA Disorders Association is collaborating on five grants that will be awarded early next year, three of which are dedicated to studying BPAN, the fastest-growing NBIA diagnosis. The other two disorders eligible for grants are MPAN and PKAN.

Researchers have been notified to submit applications for the grants this fall, and representatives of our organization will be involved in the award-selection process.

Our first call for applications is for two grants of $51,020 each to study BPAN, or Beta-propeller Protein-Associated Neurodegeneration. Those applications involve a two-step process: submitting a letter of intent, undergoing a review and being asked to submit a full application, due Oct. 15.

MDBR logoOrphan Disease Center logoThese two grants are made possible by our participation in a matching grant program offered through the 2018 Million Dollar Bike Ride Pilot Grant Program, administered by the Orphan Disease Center at the University of Pennsylvania. For the second year in a row, Team NBIA Disorders raised more than enough money, a total of $52,040 for the 2018 ride, to receive a $50,000 match from the Orphan Disease Center.

Although that center will manage the grant, our organization created the application criteria and made sure it matched our BPAN research priorities. Members of our Scientific & Medical Advisory Board will review the submissions. At the completion of the research projects, we will get a report on the findings to disseminate to our NBIA community.

Funding for these two awards will start in February 2019.

AISNAF logo1Hoffnungsbaum logo1The other three grants are being made possible through an international collaboration with two of our European sister NBIA organizations, AISNAF in Italy, and Hoffungsbaum e.V. in Germany.

In July, we announced a joint funding initiative with these groups to study BPAN, Mitochondrial-membrane Protein-Associated Neurodegeneration (MPAN) and Pantothenate Kinase-Associated Neurodegeneration (PKAN). Each grant to study those disorders will be funded for a year, up to 40,000 euros, which is about $45,000 in US dollars. It is hoped that the winning recipients will receive larger government or foundation grants to continue their work in future years.

The award money is coming from funds raised by the three organizations where contributions were earmarked for these specific disorders.  Pooling these funds enables us to offer grants more quickly.

For all three grants, AISNAF will be the manager. But all three funding organizations have equal responsibilities and rights, which includes nominating representatives to participate on the Scientific Advisory Board and Lay Review Board for each grant.

Researchers were notified they have until Sept. 15 to submit their proposals. Funding for the projects will begin in January 2019.





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