+1 816-809-2772 // 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.
FOP Registry Project Manager
Sammi Kile began her role as FOP Registry Project Manager for the IFOPA in August 2019. Sammi will continue to build upon the FOP global disease registry, ensuring that this important dataset will accelerate research and improve our understanding of FOP. Sammi comes to the IFOPA from Viveve Medical, where she managed the operations of their lead clinical trial. In this position, Sammi worked with internal stakeholders, clinical sites, external CROs and opinion leaders to successfully manage the complexities of trial execution. Sammi also brings registry experience to this role from her tenure at CVS Health, where she worked with four different disease registries. Sammi has a master’s degree in data science from Regis University and a bachelor’s degree in psychology and neuroscience from the University of Colorado. Sammi is based in the Denver, Colorado area.
+1 720-341-6999 // Mountain time zone
+1 913-558-1879 // Central time zone
Karen Kirchhoff, MSPT
Family Services Coordinator
Karen Kirchhoff joined the IFOPA as Family Services Coordinator in October 2019. She runs the Ability Toolbox program working to empower people with FOP, support their families and caregivers and educate medical professionals to promote problem-solving and independence. Additionally, Karen manages the Elaine & Harold Kaplan Quality of L.I.F.E. Awards helping community members secure items that improve their day-to-day life. Karen brings a great range of experience to this role with more than 18 years in direct pediatric therapy, parent education and training, coordination of services and client case management. For the majority of her career, she worked for Infant Toddler Services of Johnson County, KS, as a physical therapist, family service coordinator and program evaluator. Karen has a bachelor's degree in education and a master's degree in physical therapy from the University of Kansas. She enjoys helping individuals and families in a variety settings and is excited to develop relationships in the FOP community to ensure more access to care and support. Karen is based on the Kansas side of the Kansas City metro area.
Hope Newport, CCLS
Family Services Manager
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 for 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.
+1 785-294-1607 // Central time zone
+1 843-709-3244 // Central time zone
Community Fundraising Manager
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 Grand Forks, North Dakota.
L. Adam Sherman
Research Development & Partnerships Director
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.
+1 617-750-5904 // Eastern time zone
+1 210-721-1218 // Central time zone
Donor Relations & Digital Coordinator
Brianna Tanner joined the IFOPA as Donor Relations & Digital Coordinator in May 2019. She supports the FOP community by managing content for the IFOPA's social media and email newsletters, updating the website, processing gifts, communicating with donors and assisting with IFOPA meetings. Brianna recently graduated with a bachelor's degree in communication from The University of Texas at San Antonio. She is excited to use her education and professional background managing relationships and organizing complex business transactions to pursue her passion for nonprofit work. Brianna's six years with a busy real estate office also gave her valuable marketing and communications experience, as well as client service expertise. Brianna is based in San Antonio, Texas.