MDBR sets donation record and makes 2 scholarships possible
The NBIA Disorders team and NBIA families raised a record amount for BPAN research this year as part of the University of Pennsylvania's (UPenn) Million Dollar Bike Ride (MDBR). You can find more information about this charity bike race here: https://www.hoffnungsbaum.de/mdbr2023/
In total, the team raised $64,188, including registration fees and $12,220 from another fundraiser. UPenn contributed another $30,000, and another $25,814 went to the BPAN fund because the recipient of the 2019 MDBR grant, Dr. Paul Lockhart from Melbourne, Australia, ran into difficulties during the pandemic and was unable to spend that amount. This means a total of $120,000 is available for two BPAN research grants totaling $60,000. UPenn will administer the grants and has invited BPAN researchers to submit a one-page letter of intent by September 15, 2023. Complete applications by invitation were due October 16, 2023. For more information, see the call for proposals on the NBIA Disorders Association (NBIA DA) website: https://www.nbiadisorders.org/research/grants-program-funding-opportunities
As in previous years, the NBIA DA writes the application criteria and selects the reviewers. In addition, the NBIA DA will be kept up to date by the researchers so that the NBIA community can be informed of progress. The funding period runs from February 1, 2024 to January 31, 2025.
Participants of the "NBIA Disorders" team on the day of the race in Philadelphia. Picture: NBIA DA
The MDBR took place both in person and virtually, a popular pandemic-era option that allows NBIA families unable to travel to Philadelphia to participate. In total, there were 29 team members who collected donations, drove, volunteered and encouraged others to donate on their behalf. The NBIA Disorders team volunteers were also on hand at a rest stop with water and snacks for the cyclists.
While we celebrate the extraordinary achievement of NBIA Disorders, we also recognize the generosity of the donors and supporters who have made this success possible. Their contributions, both financial and emotional, have been instrumental in advancing research into BPAN, now the most common NBIA disorder.
Slightly modified translation of the original article by Patricia Wood from the September newsletter of the NBIA DA:
https://www.nbiadisorders.org/images/newsletters/NBIA_Disorders_Association_September_2023_Newsletter.pdf
