FD/MAS Alliance and UPenn ODC Award the 2020 FD/MAS Research Grant

We’re thrilled to share the news that the 2020 Team FD/MAS Million Dollar Bike Ride Research Grant has been awarded to Dr. Mara Riminucci for her project entitled:

Osteoclasts and Pain in Fibrous Dysplasia: Investigating and targeting the molecular links in a transgenic mouse model (EF1α-GsαR201C mice) of human fibrous dysplasia

Dr. Mara Riminucci

Dr. Riminucci will receive $66,263  to perform cutting-edge research that will hopefully bring us closer to an effective treatment for FD/MAS.  Learn more about this and past projects here.

These grants were made possible by the fundraising of Team FD/MAS led by Team Captain Cindi Brandt Levin,  Aurélie Lagneau and Association MASFD, and Dr. Andrew Shenker, along with $30,000 in matching funds from the Orphan Disease Center (ODC) of the University of Pennsylvania.

“During the pandemic, I was moved by our community’s continued support of this incredible opportunity for FD/MAS directed research, and I am grateful to the ODC and everyone who made this virtual event a huge success,” said Brandt Levin, “If 2020 taught us anything, it is that breakthrough medical treatments are possible if the FD/MAS community continues fighting for progress. The key to treat FD/MAS is out there, and the only way it will happen is funding the research that will unlock that breakthrough discovery.” 

Applications from researchers were reviewed by members of the Alliance’s Scientific Advisory Council (SAC) along with the ODC. They scored each based on its scientific merit and potential to serve the FD/MAS community and then selected the most promising proposal.  “Dr. Riminucci’s project builds on her excellent previous work on a mouse model with FD-like skeletal lesions and will test several potential new approaches to treat these lesions.  In addition, she will study the mechanisms of bone pain related to the progression of the lesions, and the ability of different treatments to reduce pain” said Dr. Andrew Shenker, a member of the SAC. 

This is Dr. Riminucci’s fourth Team FD/MAS research grant. The award will help her advance the important ongoing work in her laboratory at the Sapienza University of Rome.  “Working on mice with FD-like lesions, we have previously shown that osteoclasts, the cells that remove bone to allow the growth and repair of the skeleton, play a major role in the development and progression of FD,” said Dr. Riminucci. “Indeed, osteoclasts remove bone within FD lesions in an uncontrolled manner and interfere with its replacement by newly formed, normal bone. Unfortunately, one factor that is known to inhibit osteoclasts may also interfere with normal bone growth and repair in unaffected parts of the skeleton. Therefore, we will try to develop new strategies to selectively inhibit the formation or negative effects of osteoclasts only within the FD lesions,” explained Dr. Riminucci. “We hope that these strategies will be able to prevent the development and progression of FD without affecting the entire skeleton. In addition, we plan to use our mouse model to investigate the mechanisms that cause bone pain in FD, and possible ways to treat it.”

The FD/MAS community is, of course, most interested in seeing these research projects lead to new insights and treatments to halt or reverse bone disease and improve the experience of living with FD. “It is very exciting to see researchers address the common and crucial concern of bone pain in FD, and to see that Dr. Riminucci’s ideas continue to show promise for progress,” said FD/MAS Alliance Executive Director Adrienne McBride. “Team FD/MAS’s great hope is to advance as many good ideas to understand and treat FD/MAS as possible, and to move those ideas from the lab to the actual treatment of patients.”

In the past, these grants have mainly been funded by small, individual donations. This year. Team FD/MAS received a very generous donation to our research grant fund and the support of an important community champion. 

Aurélie Lagneau and Association MASFD, the patient support group organized in France, inspired the launch of the 2020 campaign with a generous donation of $20,000. Fueled by a passion to help her young daughter, Lagneau raised these funds primarily through the sale of knitting patterns through her charitable business, Supportive Skeins. Lagneau’s gift was instrumental in helping Team FD/MAS reach the $30,000 match gift. 2020 was a challenging year to raise money, and without Lagneau’s support, as well as the fundraising efforts of Dr. Andrew Shenker from the SAC and Team Captain Cindi Brandt Levin, Team FD/MAS could not have supported a 2020 research project.

We are grateful to everyone in the community who donated to MDBR 2020.  We also are grateful to the “virtual” riders registered to ride on the Team FD/MAS roster for our successful event day:   Sue Barnicle, Mark & Pam Beaudoin, the Corvelle Family, Wendy Daubel Thompson, Suzie Doody, Dr. Ed Hsiao, and Ian Hsiao, Rachel Klein, Aurélie Lagneau, Cindi, Fred, Jami & Carly Levin, Barry and Lori Offitzer, Dr. Shenker, & Dr. Wenn Sun, Petra U, and Kiran Yarlagadda.  

Save the Date for the 2021 event:  June 12, 2021!  If you cannot ride or attend, you still can be part of our fundraising campaign for Million Dollar Bike Ride 2021 — This initiative is one of the most powerful ways to advance research in the field of FD/MAS–Learn more!

 Click here to donate to the FD/MAS Alliance