+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 the 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 provides strategic support to fundraising activities and manages the IFOPA's marketing, advocacy and awareness initiatives. Michelle is based in Kansas City, Missouri.
+1 202-812-6462 // Central time zone
Danielle Kerkovich, PhD
Director of Research Development and Partnerships
Danielle Kerkovich, PhD, began her role as Director of Research Development and Partnerships for the IFOPA in April 2021. She works with the Research Committee to implement strategies and activities that advance FOP research. Danielle is engaged with the IFOPA’s grant funding programs, tools such as the FOP Biobank and mouse model, academic and industry partnerships, collaborative forums and working groups, and educational resources on FOP research, clinical studies and trials. She also provides management oversight for the IFOPA's FOP Registry.
Danielle received her doctoral and master's degrees in biomedical sciences from the Albert Einstein College of Medicine of Yeshiva University. She has extensive experience with government and foundation programs and has been involved with planning and projects ranging from post-war rehabilitation following polytrauma, spinal cord injury and amputation including trauma-induced heterotopic ossification. Her experiences in rare diseases and conditions range from fourth-degree burn injury to pediatric cancers, and lysosomal and metabolic diseases including juvenile Batten (CLN3) disease where she is responsible for bringing the first interventional treatment for the disease to a Phase II/III trial planned for 2021.
Danielle brings an understanding of how to coordinate people and information in a rapidly-changing environment and creatively face challenges. She’s honored to be a part of the exciting research efforts happening with the IFOPA and the FOP community and hopes to see more discoveries and positive changes in the lives of individuals with FOP and their families. Danielle is based in Houston, Texas.
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
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, Kansas, 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
+1 816-674-8474 // Central time zone
Jamie Roach joined the IFOPA as Operations Director in August 2021. In this role, she works closely with the staff, Board and volunteers and helps manage key functions of finance and accounting, human resources, information technology, volunteer management and reporting and helps support advocacy. Jamie brings more than 15 years of strategic leadership and project management experience to the IFOPA. She began her career as a fundraiser for a regional food bank and ultimately served as the Director of Fund Development. She then worked as Director of Nonprofit Services for an accounting firm where she developed more interest in operations and collaboration. Most recently, she was the Executive Director of a small housing and home repair nonprofit organization. Jamie has a bachelor's degree in psychology from William Jewell College and a master's degree in nonprofit management from the University of Missouri-Kansas City. As someone who has a rare genetic disease in her family, Jamie understands the importance of raising awareness and finding treatments and a cure for diseases that have a significant impact on people’s lives. She’s excited to be part of the IFOPA team and build relationships within the FOP community. Jamie is based in the Kansas City metro area.
Fundraising and Special Projects 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 Fundraising and Special Projects Manager, Cathryn supports the IFOPA community's fundraising events and campaigns. She also leads organizational fundraising efforts, manages the IFOPA's monthly giving program and directs other special projects. Cathryn is based in Boston, Massachusetts.
+1 843-709-3244 // Central time zone