FDF and UPenn ODC Award Two FD/MAS Research Grants

The Fibrous Dysplasia Foundation and the University of Pennsylvania Orphan Disease Center are pleased to announce the winners of the 2019 Million Dollar Bike Ride research grants. These important seed grants pave the way for new, innovative research to investigate fibrous dysplasia and McCune-Albright syndrome (FD/MAS).
This year’s awardees are:

  • Dr. Yingzi Yang of the Harvard School of Dental Medicine for her proposal: “Mechanistic and Therapeutic Studies of Fibrous Dysplasia Craniofacial Defects”
  • Dr. Julia Charles of Harvard Medical School  for her proposal: “Do Osteoclasts Mediate Bone Marrow Fibrosis in Fibrous Dysplasia?”

Dr. Yingzi Yang 

Dr. Julia Charles

Thanks to Team Captain Cindi Brandt Levin, Adrianna Cannone, and the Beaman Family Foundation, along with eighteen other community campaigners and $30,000 in matching funds from the UPenn Orphan Disease Center,  the FD/MAS community raised over $109,000 to support cutting edge research this year. “It was great to see so many people step forward to fundraise this year and to have eight eminent researchers compete for these grants with promising proposals.” Said Brandt Levin, “Of the eight applications from these researchers, it was disheartening to only be able to fund two projects, and I hope in 2020 more campaigners in the FD/MAS community will join us to raise money to fund more of these inspiring scientists who are focused on beating this disease. The breakthrough research to treat FD/MAS is out there, and the more support we can inspire, the more likely we are to fund the research that will unlock that breakthrough discovery.” 

The eight proposals submitted were reviewed by members of the Fibrous Dysplasia Foundation’s Scientific Advisory Council (SAC). They scored each based on its scientific merit and potential to serve the FD/MAS community and then selected the two most promising proposals.  “I was gratified to see the number of high-quality applications submitted this year, focused on developing a better understanding of FD/MAS at the cellular level and/or discovering potential new treatments,” said Dr. Andrew Shenker, SAC Chair. 

The award winning projects are both impressive and promising proposals.

Dr. Charles’ project will examine osteoclasts, the cells that break down bone, and their relationship to osteoblasts, the cells that form bone. “Although the mutation causing FD bone lesions is in osteoblasts, we know that certain mutations in osteoclasts can cause osteoblasts to behave abnormally and so we will test whether osteoclasts are required to cause abnormal behavior in osteoblasts in FD lesions,” explains Dr. Charles, “If that hypothesis is true, then it would be a strong scientific justification that drugs that block osteoclast function, like denosumab, should be more thoroughly explored as a treatment for FD bone lesions.”

Dr. Yang  previously received Team FD funding from the 2017 Team FD grants to characterize an important new mouse model of FD that her lab created. Dr. Yang will focus on craniofacial FD and her project aims to find a way to reduce fibrotic overgrowth and promote normal craniofacial/maxillary bone ossification. “This project builds upon our previous work and tests additional therapeutic targets,” explains Dr. Yang, “this funding is critical for us to obtain competitive data for bigger funding.”

Indeed, the importance of Team FD grants can not be overstated. “This project could never be done without the FDF’s funding,” said Dr. Charles  “The mouse model for FD bone lesion development that we will use was developed with funding from the FDF and arguably recapitulates the pathophysiology of FD bone lesions better than any other model.” Dr. Charles went on to explain that it is difficult to get larger grants, such as those offered by the NIH, without a track record in the field. “ FDF funding means that a scientist who is not an FD specialist, like me, is able to get support to pursue FD research. Hopefully, that creates synergies and brings ideas from other fields into FD research.” 

Team FD’s great hope is to advance as many good ideas to understand and treat FD|MAS as possible. 

Though these projects were mainly funded through small donations to crowdfunded community fundraisers, Team FD also received a very generous extension to our research grant fund this fall.

Adrianna Cannone, FD Patient and advocate

The Beaman Family Foundation was inspired to give in honor of Adrianna Cannone, a patient living in Ohio. “I cannot fight this disease alone,” said Cannone,  “There are so many stories that need to be heard and shared and I was tired of keeping mine between the walls of the Hospitals where I was being treated.” While Cannone feels confident in her medical team and the support network of friends and family she’s built, she knows that not all patients are so lucky. “I’m excited to see the new breakthroughs the Foundation can use with this generous donation from my dear friends. My prayer, hope, and life motto is to keep going!”

We are grateful to Adrianna Cannone, to the Beaman Family Foundation, and the amazing people, supporters and donors behind Cycle for Carly and the Levins, Rylan’s Rhythms and the Pedersons, Deanna Portero, Regina Charmichael, Barb Robinson, Elizabeth Hoffman, Debbie Lacelle, Jonathan Morgan, Joelle Pollastro, Sarah Healy, Hope for Harper and Christners, Anne Corvelle, Jesse Foster, Kiran Yarlagadda, Anne Corvelle, Lauren Ruotolo, Jack Keeling, and Wahoo Riders and the Romer/Indresanos. All of the funds raised from the hard work and dedication of these campaigns are going towards FD/MAS research. 

Save the date for next year’s event:  June 13, 2020! If you cannot ride or attend, You still can be part of our fundraising campaign for Million Dollar Bike Ride 2020 — This initiative is one of the most powerful ways to advance research in the field of FD|MAS–details to follow!

 Click here to donate to the Fibrous Dysplasia Foundation.