FDF is thrilled to welcome Lauren Cox and Leah Suprise to our Board of Directors. Those who have been in the FD/MAS community for some time will be familiar with these two dynamic, driven, and passionate advocates.
Lauren Cox is an FD patient and the graphic designer behind the FD/MAS awareness ribbon. Lauren’s work with FD Warriors Inc and as moderator of the FD Support Group on Facebook make her passion for supporting the FD/MAS community clear. Lauren is a full-time student, mother, and fierce advocate for the FD/MAS community. Lauren will serve as the inaugural chair of the Advocacy Committee and continue her work to develop an FD/MAS Awareness Week as well as securing federal funding for FD/MAS research.
Leah Suprise is the mother of a young MAS patient. Leah has already acted informally as a touchstone for many parents seeking reassurance as they navigate the challenges of raising a child with a rare and complicated disease. She brings wonderful experience working in the non-profit sector and a great passion for improving the lives of patients. Leah has joined the Patient and Family Services Committee and her determination and can-do spirit is already an asset to the team.
FDF is a patient organization, which means that those who live closest to the disease, fibrous dysplasia and McCune-Albright syndrome patients and caregivers– are the ones who determine the course of our work. The wealth of experience within the FD/MAS community is a great resource, and the determination of those whose daily lives are affected by FD/MAS is unmatched, but for scientific and medical expertise FDF turns to others for guidance.
The Scientific and Medical Advisory Councils guide the Board of Directors on FDF’s research and clinical support programs. Their advice helps FDF determine best practices for supporting research, managing the Patient Registry, answering patient questions, and providing accurate research. At the beginning of 2019, FDF reached an important Milestone when both these advisory councils transitioned leadership.
Dr. Alison Boyce and one of the leading experts in FD/MAS clinical research and care became chair of the MAC. Dr. Boyce is well known in the community equally for her world-renowned expertise and her compassion for patients, qualities which earned her FDF’s constellation award in 2017. She assumes this leadership role from her colleague, Dr. Mike Collins, who was FDF’s very first Medical Advisory Council Chair and remains a close advisor of the Foundation. Currently Dr. Boyce is helping FDF plan the upcoming Patient Conference where she will once again meet with patients and lead several presentations.
FDF’s Scientific Advisory Council is now chaired by Dr. Andrew Shenker. Dr. Shenker part of the team that discovered the gene mutation that leads to FD/MAS and brings great perspective for the complicated territory of rare disease research. Since he assumed this leadership post, Dr. Shenker’s determination to improve the possibilities for FD/MAS research has been clear in the high standards he holds for FDF’s research programs. Under his guidance the SAC is already working to make sure Team FD’s Million Dollar Bike Ride funds go to the best possible use, and exploring the current state of mouse model sharing possibilities between labs.
FDF is proud to work under the direction and guidance of such impressive leaders. The health of the organization depends on community commitment and feedback. The board continues to welcome engagement from all patients, parents, researchers, clinicians and advocates who are as determined as they are to improve the lives of those living with FD/MAS.