[email protected]
+1 913-449-0005 // Central time zone
Emily Barnes
Marketing Manager
Emily’s career has spanned both the nonprofit and agency worlds—starting in fundraising and nonprofit marketing, shifting to agency roles, and now returning to nonprofit work. Most recently, she helped organizations worldwide elevate their impact through brand strategy, creative campaigns, and digital engagement as a partner in a boutique digital media agency. After collaborating on everything from global advocacy initiatives to website redesigns, she’s excited to bring her expertise to IFOPA and amplify the voices of the FOP community. A passionate storyteller and strategic communicator, Emily is eager to build relationships with individuals living with FOP, families, and healthcare providers. She is an award-winning conference and workshop presenter, her experience with nonprofits of all sizes—local to international—offers valuable insight into diverse challenges and solutions. Having worked with IFOPA as an agency client years ago, stepping into this role is a meaningful full-circle moment. Based in Kansas City, Emily enjoys thrift shopping, reading, cooking, and planning her next travel adventure. Most of all, she loves spending time with her two kids, who keep life joyful and exciting. With a personal connection to rare disease advocacy, Emily is hopeful for continued progress toward treatments and a cure, and she can’t wait to share the incredible stories of this community!
[email protected]
+1 605-877-5289 // Mountain time zone
Melissa Davis, OTR/L
Family and Provider Support Coordinator
Melissa joined the IFOPA as Family and Provider Support Coordinator in February 2024. As an occupational therapist, Melissa Davis is passionate about patient education and reducing barriers to independence. She helped develop the first accredited Spine and Joint Institute in the state of Montana and has extensive experience in home health care. Working in predominantly rural communities equipped her to be a resourceful, flexible healthcare provider who can adapt to her patients’ unique needs. In her new role as the Family Services Coordinator for the IFOPA, Melissa informs resources and direct support related to the Ability Toolbox Program which promotes independence and quality of life through adaptive tools and problem-solving mindsets. Melissa is excited to learn from the FOP community, connect with families around the world and create helpful resources for individuals impacted by FOP. Melissa is based in Bozeman, Montana.
[email protected]
+1 816-809-2772 // Central time zone
Michelle Davis
Executive Director
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 provides strategic support to fundraising activities and manages the IFOPA's marketing, advocacy and awareness initiatives. Michelle is based in Kansas City, Missouri.
Sammi Kile
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.
[email protected]
+1 720-341-6999 // Mountain time zone
[email protected]
+1 765-993-0751 // Central time zone
Brian Miller
Director of Development
Brian Miller is a seasoned fundraising professional with over two decades of experience in donor cultivation, major gift solicitation, and nonprofit leadership. As Director of Development at IFOPA, he brings expertise from roles at Global Christian Relief, Blackbaud, New Life Media, and Scouting America, where he built meaningful donor relationships and secured transformational gifts to support mission-driven work. A Certified Fundraising Executive (CFRE), Brian is passionate about advancing research and support for the FOP community and is eager to strengthen donor engagement and fundraising efforts that drive progress toward treatments and a cure. He is inspired by the resilience of those affected by FOP and looks forward to ensuring IFOPA has the resources needed to make a lasting impact. Outside of work, Brian enjoys time with his wife and three boys participating in numerous activities throughout Central Illinois out of their homebase in Lincoln, Illinois, and being a member of the volunteer team for the Nonprofit Storytellers Conference.
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.
[email protected]
+1 785-294-1607 // Central time zone
Chey Payson
Program Specialist
Chey joined the IFOPA as Program Specialist in May 2023. With a knack for developing relationships and cultivating bonds with those she serves, Chey is a skilled and compassionate advocate for the FOP community. In her role with the IFOPA, Chey provides support to the family services and fundraising departments, as well as supports the IFOPA's eNewsletters, website and awareness initiatives. Before joining the IFOPA, Chey got her start in the nonprofit world by helping Underdog Animal Rescue & Rehab develop systems and create new engagement and communication channels to better support its community. We are fortunate to be able to rely on her knowledge and enthusiasm to make a meaningful difference for people living with FOP. Originally from Massachusetts, Chey worked with several different organizations across the country before settling in Durango, Colorado.
[email protected]
+1 978-875-3500 // Mountain time zone
[email protected]
+1 816-674-8474 // Central time zone
Jamie Roach
Operations Director
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.
