Central time zone
Michelle joined the IFOPA as Executive Director in February 2016. The majority of her career has been spent working in the nonprofit sector; seven years of which were spent leading a nonprofit chamber of commerce training and consulting with local nonprofit staff, boards of directors and volunteers. In that role, Michelle was exposed to many deserving causes, but her passion has always been in working with national voluntary health agencies, including tenures at the National Kidney Foundation and Polycystic Kidney Disease (PKD) Foundation. While at the PKD Foundation, Michelle became acquainted with the rare disease community which is part of what drew her to the IFOPA. At the PKD Foundation, Michelle served in the role of Chief Development Officer where she worked in all aspects of fundraising and maintained the organization’s relationships with industry. Michelle also led the organization’s education and advocacy initiatives, including organizing patients for an FDA Advisory Committee meeting for the review of the first-ever treatment for PKD, tolvaptan. At the IFOPA, Michelle is partnering with the Board of Directors to develop the organization’s strategic plan and corresponding fundraising, marketing and communications and advocacy and awareness plans. She is also leading the development of family programs and services to better serve and connect the FOP community. Michelle is based in Kansas City, MO.
L. ADAM SHERMAN
RESEARCH DEVELOPMENT & PARTNERSHIPS DIRECTOR
Eastern time zone
Adam began his position with the IFOPA as Research Development & Partnerships Director in March 2017. He is a seasoned biopharmaceutical professional with over 20 years of experience in leading research collaborations focused on finding treatments and cures for rare diseases. Adam considers himself fortunate to have begun his career at Genzyme, the original pioneer and leader in rare and ultra-rare diseases. While at Genzyme, he worked directly with patients and listened carefully to their challenges and needs. This patient-centric focus continues to influence his career and has led to a proven record of building successful collaborative research efforts and aligning key stakeholders in pursuit of a common goal. Prior to joining the IFOPA, Adam worked at Biogen as the Executive Director of Program Leadership and Management for Rare Diseases. During his tenure at Biogen, he developed and executed the largest-ever humanitarian aid program for hemophilia, with a commitment to delivering up to 1 billion IUs ($2 billion) of hemophilia factor to the developing world. To date, over 7,500 patients in 41 countries have received needed access to this life-saving treatment. In his role as Research Development & Partnerships Director at the IFOPA, Adam will build upon existing partnerships and work to create new and lasting relationships between the IFOPA and like-minded organizations critical to finding a treatment and cure for people living with FOP. Adam is based in Newton, MA.
IFOPA Project Consultants
COMMUNITY FUNDRAISING MANAGER
Mountain time zone
FOP CONNECTION REGISTRY STUDY MANAGER
Eastern time zone