August 14, 2018
The 2018 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 2018 Million Dollar Bike Ride.
This Request for Applications (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. Letters of Interest (LOIs) are due no later than Monday, September 10, 2018 by 8pm EST. Please contact Samantha Charleston, Assistant Director of ODC at email@example.com , or (215) 573-6822 with any questions.
Team NBIA Disorders represented the NBIA Disorders Association at the fifth annual Million Dollar Bike Ride for rare disorders in May. They, along with many BPAN families holding community fundraisers, raised $52,040 for BPAN research and $50,000 was matched by the University of Pennsylvania’s Orphan Disease Center Pilot Grant Program.
Two grants of $51,020 each will be awarded for Beta-propeller Protein-Associated Neurodegeneration (BPAN).
BPAN RFA Information
BPAN- A Neurodegeneration with Brain Iron Accumulation Disorder: Two $51,020 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.
Please see the 2018 MDBR Request for Applications below for more information.
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.
AISNAF as grant manager of this Joint Funding Initiative is currently accepting proposals for one-year research grants that will pave the way to new potential treatments for NBIA disorders.
Submission deadline for proposals is September 15, 2018, with funding to begin in January, 2019. Additional information and the grant application can be found here: https://www.aisnaf.org/bandi-per-progetti-calls-for-proposals/