NBIA Disorders Association Announces Research Grants for Neurodegeneration with Brain Iron Accumulation (NBIA)
A cycling team representing the NBIA Disorders Association raised over $50,000 for BPAN research and will have the full amount matched for taking part in the University of Pennsylvania Health System’s fourth annual Million Dollar Bike Ride for rare disorders. Two grants of $50,507 each will be awarded for Beta-propeller Protein-Associated Neurodegeneration (BPAN).
For more information on this funding opportunity supported by NBIA Disorders Association, please see our news article:
2017 Million Dollar Bike Ride Pilot Grant Program: Request for Applications
The 2017 Million Dollar Bike Ride Pilot Grant Program is now open! The MDBR Pilot Grant Program provides a one-year grant to support research related to a rare disease represented in the 2017 Million Dollar Bike Ride.
The Orphan Disease Center (ODC) at the University of Pennsylvania invites you to participate in the 2017 Million Dollar Bike Ride Pilot Grant Program. The program is now open and offering 33 different research grant opportunities focusing on 23 different rare diseases. This program provides a one‐year grant to support research related to a rare disease represented in the 2017 Million Dollar Bike Ride. Number of awards and dollar amounts vary per disease based on fundraising totals by each disease team. This RFA is open to the international community. All individuals holding a faculty‐level appointment at an academic institution or a senior scientific position at a non-profit institution or foundation are eligible to respond to this RFA.
For more details about this grant program, rare disease focus areas, and how to apply, please visit the ODC website. Letters of Interest (LOIs) are due no later than Monday, September 18, 2017 by 8pm EST. Please refer to their website for instructions on LOI submission.
Please contact Samantha Charleston, Assistant Director at the Orphan Disease Center at firstname.lastname@example.org, or (215) 573-6822 with any questions.
BPAN- A Neurodegeneration with Brain Iron Accumulation Disorder: Two $50,507 pilot grants are available for clinical and translational research studies related to the detection, diagnosis, or treatment of this rare, X-linked disorder caused by mutations in WDR45. BPAN typically is recognized in early childhood with delayed development and seizures. In adulthood, people with BPAN develop rapidly progressive parkinsonism. At the present time, symptoms may be treated but there are no cures.
Grants are expected to generate essential resources for the scientific community, advance knowledge about BPAN disease processes, and produce preliminary data to enable national and international funding to carry the work forward. Examples of priority topic areas include developing disease models that complement existing models, identifying biomarkers, delineating the molecular cascade that leads to early cellular changes, developing rational therapeutics, establishing outcome measures to be used in clinical trials, and developing other essential resources to substantially prepare the BPAN community for clinical trials. Natural history studies must have a component that includes participation in the International NBIA Patient Registry & Biobank. These grants are made possible by Team NBIA and BPAN families with the NBIA Disorders Association.