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2019 Family Conference
Tenth International NBIA Disorders Association Family Conference
May 30 – June 2, 2019 -
NBIA Family Stories
Watch these informative and inspiring stories of families affected by an NBIA diagnosis.
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Support the International NBIA Patient Registry and Biobank
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- News
Deadline looming to seek BPAN research grants
Hurry! June 15 is the deadline to apply for NBIA Disorders Association research grants to study Beta-propeller Protein-Associated Neurodegeneration (BPAN).
The association plans to award two grants for BPAN research with money raised exclusively by BPAN families.
One is a $45,000 grant that is open to all scientists. The organization is interested in projects that have the potential to generate essential resources for the scientific community, advance knowledge about NBIA disease processes and produce preliminary data so that additional national and international funding can carry the work forward.
The other grant is for an early-career faculty investigator grant — our first such offering. Applicants must be within five years of their first faculty appointment, or the equivalent. The selected recipient would get up to $75,000 each year for two years, with an option for a third year, depending on progress.
Scientists report on progress of current NBIA research projects
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.
Nearly $150,000 in grants awarded for BPAN research
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.
