FD/MAS Research Grants Announced

FD/MAS Alliance is thrilled to share that two FD/MAS research grants have been awarded from the 2022 Million Dollar Bike Ride

Last spring, Team FD/MAS raised $160,000 for FD/MAS-focused research through the UPenn Orphan Disease Center’s Million Dollar Bike Ride. After careful review of several applications by the FD/MAS Alliance’s Scientific Advisory Council and the UPenn Orphan Disease Center’s staff, two grants of $80,000 each have been awarded:

  • Dr. Anne-Marie Heegaard, University of Copenhagen
    “Pain and Analgesic Mechanisms in a Mouse Model of Fibrous Dysplasia”

“Pain is a common and difficult-to-control symptom for many fibrous dysplasia patients. We have investigated a mouse model of fibrous dysplasia and found that the mice display pain-related behaviors. We have also found that the mice with painful fibrous dysplasia have changes in the peripheral nervous system and an increased expression of factors, which might contribute to the pain. Therefore, the goal of this project is to use the fibrous dysplasia mouse model to further investigate the mechanisms underlying pain in fibrous dysplasia and to test new treatment avenues.”

  • Dr. Mara Riminucci, Department of Molecular Medicine, Sapienza University of Rome
    “Investigating key clinical aspects of Fibrous dysplasia of bone in a transgenic mouse model (EF1a-GsαR201C mice) of the disease: pain, effect of anti-resorptive treatments and “rebound” phenomenon.”

“In our previous MDBR award, we have shown that in our mouse model of human Fibrous dysplasia (FD), inhibition of bone resorption ameliorates bone pain-like behavior. In this project, we will investigate the number and distribution of nerve fibers involved in pain transmission within mouse FD lesions and their changes upon administration of anti-resorptive drugs. We think that altogether these studies will help to clarify the mechanisms of bone pain associated with FD and to improve its treatment.”

Each year, FD/MAS Alliance’s Scientific Advisory Council (SAC) writes a Request for Applications (RFA) to help guide Team FD/MAS’s grant money. Pain has been noted as an important topic area for the FD/MAS community. We are gratified to see that in this year’s grants, both awardees will address FD/MAS-related pain in their projects. “Each year, we see a competitive pool of research proposals, and this year was no exception,” said Dr. Michael Collins, Chair of the SAC, “The progress these research grants have made is a real testament to Team FD/MAS. These two awarded projects further the important work of the Alliance.”

These research projects have been made possible by the ten Team FD/MAS champions who fundraised for FD/MAS research and the over 260 donors whose generosity they inspired in their communities. Special thanks to Sarah Healy and Cindi Brandt Levin, who acted as co-captains for Team FD/MAS, as well as the Cohen family and Aurelie Lagneau of Association MAS/FD for their significant contributions. We are so grateful.

In the 8 years Team FD/MAS has participated in the Million Dollar Bike Ride, we have raised over a million dollars for FD/MAS research. “It’s been remarkable to watch this community rally year after year and to see the researchers working on FD/MAS advance their ideas,” said Brandt Levin, “We’ve reached the million dollar mark of research funds raised, but we can’t stop there. Our next big milestone will be seeing some of the science we’ve funded impact the lives of actual people living with FD/MAS. I know that together, we can achieve that goal!”

As you make plans for the upcoming year, mark your calendars for June 10th and the 2023 Million Dollar Bike Ride with Team FD/MAS. We’d love for you to join us in person in Philadelphia or virtually!