If you keep tabs on the Fibrous Dysplasia Foundation, then you know that the organization has accomplished a lot in the last few years. The truth is, these milestones have only been possible because of the vision and direction of the people behind the Foundation.
Board of Directors
Due to term limits, this year we say farewell to several Board members who dedicated decades to guiding the organization forward: James Rae, Fred Singer, MD, and Amanda Konradi, PhD.
James Rae was a founding member of the Board of Directors and served as our volunteer treasurer for 13 years. Rae keenly guided the Foundation financially despite dealing with his own life challenges and changes as a patient. Rae even processed an entire end-of-year fundraising campaign as he prepared for and recovered from a major surgery. The program investments we make today are only possible because of the financial footing Rae helped the foundation build.
Dr. Fred Singer joined the board with an impressive record as a patient-centered clinician as the Director of the Endocrine/Bone Disease Program at the John Wayne Cancer Institute. He saw a need for improving patient’s access to care and was instrumental in guiding FDF’s research initiatives. Dr. Singer helped the Foundation understand the vast imbalance between the large number of quality research proposals that could potentially discover a cure, and the very limited funds available to power those proposals. Enthusiasm and hope for a cure was fueled by his guidance as a clinical researcher.
Dr. Amanda Konradi was also a founding board member and served as both Secretary and President of the board. Dr. Konradi’s dedication stabilized the Foundation during a crucial period of transition, when Charles Harles, the Board’s founding president, stepped down and the Foundation made its first hire, Deanna Portero. Dr. Konradi championed systematic-thinking and best practices for organizational excellence. In her own research, she’s always prioritized the patient’s voice, an approach that set her far ahead of the curve among fellow researchers. Even as Dr. Konradi steps down from the board, she will remain involved as an active member of the Patient Registry Steering Committee, focusing on patient-centered research.
Now, new hands will carry the torch and lead the FDF onward. This year we welcome Cindi Brandt Levin, Sue Barnicle, and Jack Kelly.
Sue Barnicle is a retired CPA with over thirty years of accounting experience including many years of volunteering her services for local non-profits. The FDF holds a special place in Barnicle’s heart, as her granddaughter is a patient. Barnicle will take over Rae’s role as the Foundation’s Treasurer. “I hope to be able to follow In Jim’s able footsteps with accurate, current, and complete financial reporting, and to help share the excitement and growth of the foundation to an ever broadening audience,” said Barnicle.
Jack Kelly has been active in the rare disease space since his late daughter, Jana K. Sheets, was diagnosed with Lymphangiomatosis & Gorham’s Disease and founded the Lymphangiomatosis & Gorham’s Disease Alliance (LGDA). Kelly is the president of the LGDA board and has been a powerful force for advancement in that community. “I have been much aware of the work of the FDF, as both a member and previous co-chair of the Rare Bone Disease Patient Network.” said Kelly. FDF leadership identified Jack as a willing collaborator with similar goals and valuable experiences. He was invited to join the board in order to bring those experiences and perspectives to our team.
Cindi Brandt Levin first volunteered for the FDF as the chair of our 2014 Patient and Family conference. As the parent of a patient, Brandt Levin left the conference dismayed that there wasn’t more information for patients out there or research progress being made for the future largely due to lack of funding. She was inspired by the research clinicians already involved with FD/MAS and was determined to find more funding and researchers to help them. Brandt Levin discovered the UPenn Million Dollar Bike Ride and, as the Captain of Team FD, has helped raise over $300,000 for FD/MAS specific research. As part of the Board, Brandt Levin will guide the research priorities and funding process. “I’m especially excited to be involved in the Board as we plan our next Patient and Family Conference,” said Brandt Levin. “It will be great to share the progress we have made over the last three years, and I know the Foundation and this community is just getting started. I’m committed to doing everything I can until we find a cure for my daughter and for patients like her.”
Medical Advisory Council
FDF’s work is guided by compassionate researchers and clinicians who offer their expertise on grant’s, best practices, and patient questions. This year we welcome Dr. Ed Hsiao to our Medical Advisory Council. In addition to treating patients, Dr. Hsiao’s laboratory uses a combination of human stem cell and mouse models to study how genetics and hormone signaling contributes to the normal formation of key skeletal tissues such as bone, cartilage, muscle, and fat. Dr. Hsiao will share his expertise with the Foundation to broaden our educational and research programmatic goals.
In Fall 2016, FDF grew a little larger, and much stronger, with the addition of part-time program manager Tovah Burstein. Tovah joined the FDF with years of nonprofit experience, graduate-level training in non-fiction writing, and a passion for helping patients and families navigate quality care rooted in her personal experience with a close family member with a rare disease. Tovah’s empathy and skills have breathed new life into FDF communications and community-building, in the form of personal stories like centurion Ann Molitor and author Jon Morgan. Hundreds of community members have already been in touch with Tovah, who has become the main point of contact for patients and families who join the FD/MAS Registry or email the foundation for informational resources. The FD/MAS Registry has grown so fast under Tovah’s watch, that the FDF is currently looking for an intern to help support this patient-powered research project.
As Dr. Konradi said, “Going into the future, I hope that the FDF will emphasize serving the social and informational needs of patients (and clinicians), while it seeks to increase its capacity to collect quality of life and disease data and to fund research. I also hope that patients and caretakers will reach out to offer their unique talents to the FDF to keep it strong. There are regional BBQs to be held, T-shirts to be designed, article summaries to be written, life histories to be recorded, and parents’ questions to be answered. We, the rare disease community, need each other.”
The Foundation is only as strong as the people who guide it forward, so gains like these–FDF board members, advisors, and staff care deeply about the FD/MAS community, and dedicate their time and talents to achieving the best for every FD/MAS patient out there–fuel optimism for the future.