July 2, 2018
NBIA lay advocacy organizations AISNAF (Italy), Hoffungsbaum e.V. (HoBa, Germany) and NBIA Disorders Association (NBIADA, USA), announce a joint funding initiative to offer 3 research grants for the study of Mitochondrial-membrane Protein-Associated Neurodegeneration (MPAN), Pantothenate Kinase-Associated Neurodegeneration (PKAN) and Beta-propeller Protein-Associated Neurodegeneration (BPAN). Funds contributed by these three organizations are available to support a one-year research project for up to € 40,000 per disease.
One of the key activities of the NBIA Disorders Association is awarding research grants, most of it with money raised by our hardworking families.
The board of trustees receives invaluable help from our Scientific and Medical Advisory Board, which helps set research goals, evaluates proposals and monitors projects after the board funds them. In evaluating proposals, the advisory board puts greatest priority on new paths of study that could lead to a treatment or a cure.
Thanks to the fundraising efforts of BPAN families, research into this NBIA disorder is taking a leap forward this year with the award of three grants totaling $146,014.
Two of the grants went to Dr. Penelope Hogarth of the Oregon Health & Science University in Portland for a natural history study of Beta-propeller Protein-Associated Neurodegeneration, or BPAN. Our organization awarded her $45,000, and another $50,507 came from the University of Pennsylvania as a matching grant in collaboration with our organization.