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 patient advocacy organizations, 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, Jynarque. At the IFOPA, Michelle leads the staff team and partners with the Board of Directors to execute the organization’s strategic plan. She oversees all fundraising activities and manages the IFOPA's marketing, advocacy and awareness initiatives. Michelle is based in Kansas City, Missouri.
FAMILY SERVICES MANAGER
Central time zone
Hope began her role as the IFOPA Family Services Manager in April 2018. She holds a Master’s Degree in Human Development and Family Studies from the University of Missouri and is also a Certified Child Life Specialist. She has over half a decade of experience working with families dealing with chronic conditions from her tenure at The Hole in the Wall Gang Camp and the Down Syndrome Guild of Greater Kansas City. During her time at The Hole in the Wall Gang Camp, an organization which helps families cope with serious illnesses, Hope developed the CampOut program to provide families with the camaraderie and normalizing activities of summer camp throughout the year. Understanding difficulties each family faced from their child’s illness, Hope tailored events and home visits to suit each camper’s, sibling’s and parent’s needs. When she moved to the Kansas City area, she continued her passion of helping families at The Down Syndrome Guild of Greater Kansas City. Hope taught individuals with Down Syndrome skills and behaviors to maximize independence in daily living and how to build positive relationships with friends. In her role as Family Services Manager with the IFOPA, she collaborates with families affected by FOP to create programs, services and educational opportunities for the FOP community. Hope is based in Kansas City, Missouri.
Facebook: Hope Newport
COMMUNITY FUNDRAISING MANAGER
Eastern time zone
Cathryn Roys joined the IFOPA as Community Fundraising Manager in October 2018. She comes to the organization with more than 20 years of success in nonprofit fundraising development and a passion for helping others. The majority of Cathryn’s experience comes from her time with Charleston Southern University where she planned and executed fundraising events and giving campaigns, strengthened relationships with donors and substantially increased revenue and major gifts. At the Columbia Museum of Art, Cathryn created strategic, effective programs to grow major gift membership and she implemented unique events to deepen donor engagement. Most recently, Cathryn developed and supported peer to peer fundraising campaigns for student organizations at Reaching Our Goal. She has a Bachelor of Arts in Liberal Studies from Masters College. In her role as Community Fundraising Manager, Cathryn provides guidance and support for members of the IFOPA community as they host fundraising campaigns and events, including Team #cureFOP. She also identifies new fundraising opportunities for the IFOPA and helps ensure good communication and engagement with the FOP community and its supporters. Cathryn is based in Columbia, South Carolina.
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, Massachusetts.
IFOPA Project Leaders
MARY ANNE FITZPATRICK
FOP REGISTRY PROJECT DIRECTOR
Eastern time zone
Mary Anne Fitzpatrick joined the IFOPA as FOP Registry Project Director in March 2018. She is an accomplished medical professional with over ten years in the nursing and clinical research fields, and 20+ years directing and managing rare disease registry programs. Mary Anne holds a Bachelor of Science in Nursing from Creighton University and began her career as an Intensive Care Unit Nurse. After ten years as a staff and assistant head nurse, Mary Anne focused on clinical research at Bard Vascular Systems and Medical and Technical Research Associates. Prior to joining the IFOPA, Mary Anne worked 20+ years at Sanofi Genzyme, formerly Genzyme Corporation. While at Sanofi Genzyme, she was a registry liaison to the Humanitarian Program which provided free medication to patients in Egypt, China and India, developed patient-focused education materials about Registry programs and planned and facilitated annual national and regional Registry meetings with the United States Medical Affairs team. Mary Anne’s experience of directing other rare disease registries, which have led to improved care and outcomes for patients, will provide valuable insight in her position at IFOPA. As FOP Registry Project Director, Mary Anne will build upon the current FOP Registry to further inform the FOP community and improve FOP disease understanding. Mary Anne is based in Medfield, MA.