Jeannie Peeper

Founder and President Emeritus

Retired Board Member

I am an adult with FOP. I graduated from the University of Central Florida in 1985 with a B.A. in Social Work. My incredible journey began when I met Dr. Michael Zasloff at the National Institutes of Health and learned that he had other patients with FOP. Contacting some of those patients gave me the incentive to start the International FOP Association, Inc. in 1988, first as a pen pal group and a means to raise funding for FOP research. I wanted to end the isolation of living with FOP. I met another person with FOP for the first time at age 31 -- what an extraordinary difference that made to my life! The first FOP Connection newsletter was published in January 1989 to connect the 11 founding IFOPA members and today the same publication serves members worldwide. I am now retired from my full-time involvement in the day-to-day activities of the organization and as a board member.

Nadine Großmann

Board Chair

After a 10-year diagnostic journey that included four harmful surgeries and being misdiagnosed, Nadine Großmann received the correct diagnosis at the age of 22. This deeply personal experience shaped her strong commitment to advance awareness, research, and support for FOP families.

In 2018, Nadine stepped up as Vice Chair of FOP Germany and has since been actively involved as a passionate patient advocate, working to increase awareness and improve care pathways and outcomes for individuals living with FOP. She joined the IFOPA Board of Directors for her first term in 2022, became Vice Chair in 2024, and Board Chair in 2026. She serves on the IFOPA's Research, Board Development & Nominating, Audit, Global FOP Awareness Day, and Jeannie Peeper Award Committees. She also served on the Strategic Planning Committee in 2024 and 2025.

Nadine is also part of an award-winning Germany-wide yearly awareness campaign for people living with rare diseases—Mensch #wiedu ("People #likeyou"). In 2019, Nadine was honored with the Jeannie Peeper Award for Inspiring Leadership. 

Combining lived experience with academic dedication, Nadine wrote her Master’s thesis on FOP and is currently completing her doctoral thesis on the same topic.

Through advocacy, research, and board leadership, Nadine brings both professional expertise and personal insight to the mission of advocating for individuals with FOP and their families and raising awareness worldwide.

Sue Kahn

Vice Chair

As an experienced nonprofit leader with expertise in rare diseases and patient advocacy, Sue Kahn is passionate about advancing FOP research and serving families affected by the disease.

After a career in corporate finance and business development in diagnostics and genetic testing, she served as the Executive Director of the National Tay-Sachs & Allied Diseases Association (NTSAD) for 14 years. Her professional background equipped her to successfully guide NTSAD’s strategic direction and operations, which included expanding and advancing its research program. She worked closely with its board of directors, giving her unique insight into governance, strategy, finance and patient advocacy.

Since leaving NTSAD in 2021, Sue has remained active in the rare disease community, mentoring, advising and serving on boards and in task force roles.

“Rare disease patient groups have so much in common, sharing opportunities as well as challenges,” she said. “I’m honored to apply my experience and knowledge to contribute to the IFOPA and the families they serve.”

Sue serves on the IFOPA's Board Development & Nominating, Finance and Strategic Planning Committees. 

Sue lives in the Boston area, where she enjoys hiking with her husband, serving in their synagogue and playing clarinet with a community band and a jazz group.

Kyle Brinkman

Secretary

Kyle's daughter, Sona, was diagnosed with FOP in 2013 when she was five years old. Since then, Kyle and his family have been involved with the IFOPA and were instrumental in starting the Accelerating Cures & Treatments (ACT) for FOP Grant Program in 2015 after Kyle joined the IFOPA's Research Committee.

A 20-year technology veteran, Kyle has extensive experience in product and technology management for social media, e-commerce, and fintech. He is currently the VP of Product at The Change Company.

Between Kyle's technical expertise and service on the IFOPA's Research Committee, he provides an invaluable depth of knowledge. He cherishes the opportunity to work alongside other Board members to help guide the organization in its efforts to discover new and promising breakthroughs.

Kyle serves on the IFOPA's Research Committee. 

"I hope that soon, we find treatments that offer meaningful improvements in the lives of our loved ones with FOP and that we support each other along the way."

Jamal Porter

Treasurer

Inspired by his daughter Savannah, Jamal Porter is a passionate advocate for spreading awareness of FOP. He’s experienced firsthand how this disease impacts the entire family after Savannah was diagnosed with FOP at the age of three. Witnessing her struggle with health scares inspires his search for a cure so no parent has to watch their child endure this disease.

For 19 years, Jamal has worked for the Simon Property Group, the leading retail real estate company in the U.S., overseeing shopping centers around the world. In his current role, he develops strategies and implements initiatives that maximize financial performance and increase brand awareness. He’s excited to draw upon his professional experience to increase awareness of FOP in his new position on the IFOPA board.

Jamal became Treasurer of the Board in 2024 and is the Chair of the IFOPA's Finance Committee. 

Jamal lives outside of Austin, Texas, with his wife Christina and their daughters Savannah and Saniya. As a family, they enjoy music, trivia game shows and sports.

Hollie Schmidt

Executive Committee Member-at-Large

Hollie is the Vice President of Scientific Operations at Accelerated Cure Project, a patient advocacy organization for multiple sclerosis. In her 24 years there, she has helped establish and run ACP's MS Repository of blood samples and data, as well as iConquerMS, a patient-powered research network for MS that performs and supports patient-centered research in MS. She also leads the organization's efforts on diversity and inclusion in MS research.

“Sharing insights across organizations and therapeutic areas can be incredibly beneficial all around,” Hollie shared. “I pledge to do all I can to leverage what I’ve learned in my MS work to benefit the FOP community."

Hollie lives in the Boston area and serves on the institutional review board of Beth Israel Deaconess Medical Center. She is also active in leadership efforts at her alma mater and her church.

Hollie became Chair of the IFOPA's Research Committee in 2022.  

Hollie is excited by the progress made in medical research over the past two decades and the potential for future breakthroughs in FOP. She looks forward to contributing her expertise in research-focused advocacy to help the IFOPA achieve its mission of curing FOP.

Helen Bedford-Gay

Board Member

Helen lives in Sale, England with her husband Chris, and their three children Oliver, Leo and Harry. Chris and Helen have been actively involved in the FOP community since Oliver was diagnosed with FOP at just 13 months old. They set up the UK’s FOP patient organization FOP Friends 12 years ago and have been working to both find a treatment and a cure for FOP, as well as provide support and friendship to those affected by the condition.

Helen is an experienced primary school teacher of 25 years but has take a career break from the job she loves to run the charity. In her role at FOP Friends, she supports those who are newly diagnosed, signposts them to the services they needs, runs the website and social media platforms, delivers projects. advocates for patients, as well as liaising with a range of professionals including medical, research and pharmaceutical representatives. In 2022, Helen was awarded the British Empire Medal in the Queen’s Jubilee Honours List.

Helen serves on the IFOPA's Family Servies, Jeannie Peeper Award and Global FOP Awareness Day Committees.

Helen has had the privilege of meeting many families and people living with FOP on her family vacations, and she is looking forward to meeting more as she takes up her position on the Board of the IFOPA. She is excited to step up and play a more active role as part of this strong and determined global community to help them achieve their vision: a treatment and a cure for FOP.

Jon Krisman

Board Member

Jon Krisman’s commitment to the FOP community is deeply personal and rooted in his family’s lived experience. His son, Ethan, is a bright, caring, and funny five-year-old living with FOP. Ethan was two and a half years old when he was diagnosed in a Washington, D.C. hospital. Ethan enjoys building Legos, playing video games with his older brother Lucas, and spending time at school and at home with his parents, Jon and Erin.

Following Ethan’s diagnosis, Jon and his family navigated a period of grief as they adjusted to a new reality. Out of that experience came a resolve to act. Jon began fundraising for the IFOPA by launching his first event, Bingo for a Better Tomorrow, which exceeded expectations, raising more than $30,000. Since then, his efforts have continued with the Bingo event and expanded to include Ethan’s Walk, an annual 5K organized by Ethan’s school, as well as an annual chili cook-off fundraiser in support of the In Pursuit of a Cure Day of Giving and an IFOPA fundraising page.

In 2025, the Krisman family was selected as the In Pursuit of a Cure Chairs, a role that further connected them with FOP families around the world and amplified their ability to share the realities of living with FOP and the critical importance of research and fundraising.

Jon currently serves on the IFOPA Fundraising Committee and has been actively involved in the organization’s mission through planning the Dad's Mini-Retreat at the 2025 Family Gathering, attending the 2025 Family Gathering, representing the FOP community at Johns Hopkins’ Rare Disease Day, participating in other FOP fundraising events, and speaking to local community groups to raise awareness about FOP.

Service is a core value in the Krisman household. Jon has worked for a local fire department for the past 17 years, and Erin is committed to her profession as a hospice nurse. Since Ethan’s diagnosis, Jon’s perspective has shifted, strengthening his commitment to advocacy and reinforcing the urgency of advancing a cure for all individuals living with FOP.

Jon is honored by the opportunity to serve on the IFOPA Board of Directors and is deeply committed to helping build a better future for the entire FOP community.

Gary McGuire

Board Member

Gary’s connection to the IFOPA is through his daughter, Natalie, who was diagnosed with FOP at the age of 10 in 2001. Natalie, now 25, is a recent attorney in Los Angeles, California, after having graduated from UCLA School of Law and passing the California State Bar in 2025.

Gary joined the Board of Directors in 2012 because he wanted to help efforts to find a cure for FOP, or at least approved treatment options. He served in his first term until 2023 and has now returned to the Board for a second term starting in 2025, after spending the mandatory one-year off the Board.

Gary has over 38 years of experience in finance, 35+ of which have been spent in the Treasury Department of The Dow Chemical Company, where, for the last 10 years, he has served as Vice President and Treasurer. Immediately prior to becoming Treasurer, Gary served as Dow’s Chief Investment Officer for 8 years, overseeing $40+ billion in investments for Dow’s pension plans and insurance subsidiaries.

Gary serves on two other nonprofit boards (a hospital and a credit union) and on several finance and investment committees. “My experience in general management and deep understanding of finance and investing enable me to add value to the IFOPA Board,” he said.

He believes sponsored research and events such as the FOP Drug Development Forum are the fastest ways to find treatments or a cure for FOP. Gary says his desire for the FOP community is to enhance the quality of life for people living with FOP and give them hope that multiple treatments and, one day, a cure are on their way.

In 2018, Gary received the Jeannie Peeper Award for Outstanding Community Involvement in recognition of his tremendous fundraising efforts through an annual letter he sends to family, friends, and business colleagues. Gary also donates his time as the Investment Manager for the IFOPA. 

Gary is married to Abbie and lives in Midland, Michigan. In addition to Natalie, he has three other children (Conner, 31; Keegan, 28; and Bingham, 12).

Molly Rhodes

Board Member

Molly Rhodes is currently a doctoral student at the University of Iowa, where she’s researching the effects of pesticides on maternal and fetal outcomes. She received her master’s degree in public health from Johns Hopkins University and served as a consultant to the World Health Organization regarding maternal morbidity and mortality.

Growing up, she witnessed the challenges her uncle faced with FOP which inspired her to advocate for others facing the same diagnosis. She has served on the IFOPA’s Global Awareness Day committee since 2019 and is excited to bring her experience in public health to the IFOPA board. Molly is encouraged by the progress in FOP research since her uncle was diagnosed in 1958 and looks forward to helping advance the search for treatments and a cure as a board member.

Molly serves on the Global FOP Awareness Day Committee. 

Molly currently splits her time between Baltimore and the Midwest with her fiancé. She enjoys cooking, reading, and spending time outside.

Manuel Robert

Board Member

Manuel Robert was diagnosed with FOP at the age of four. He's an active volunteer with Fundación FOP and has volunteered with the IFOPA since he was 18, speaking on the patient panel at the first FOP Drug Development Forum (DDF) in 2014 and again at the 2022 DDF.

He’s also committed to raising awareness in the general population, via participating in a number of media projects and speaking at national events. He hopes that with more awareness everywhere, people with FOP and their families will get to the correct diagnosis faster.

Manuel serves on IFOPA's Family Services Committee, where he aims to help design resources that address the wide spectrum of needs of the international FOP community.

As a young person living with FOP in Latin America, Manuel brings a valuable perspective to the Board and looks forward to continuing to advocate for community members who don’t speak English as a first language.

He currently lives in Buenos Aires, Argentina, where, after finishing his Master's Degree in Mathematics at the University of Buenos Aires, he feels enthusiastic about continuing an academic career. He enjoys playing board games with friends, and hopes he can get around to juggling with torches.

Tiffanie Williams

Board Member

Tiffanie was born in England and moved to Houston, Texas, with her family when she was 12. She became a US citizen and received her BA from the University of Houston. She worked in media/special events for many years, then development for a Houston homeless nonprofit, before starting her own alternative emotional health practice.

Tiffanie’s connection to the IFOPA is through her son, Daniel, who was diagnosed with FOP at the age of 6 in 2012. Daniel is now 19 and a freshman at Houston City College. She lives in Houston with Daniel and her husband, Jeff. Their older son Evan is a junior at DePaul University in Chicago. As a family, they have attended many Family Gatherings and participated in clinical trials and online support groups.

Tiffanie recently concluded seven years of service on the Board of the Houston-based nonprofit Steel Magnolia Moms. She helped grow this supportive community for thousands of mothers of children with special needs, and is an active member who helps produce and attend many of their events and workshops.

In 2024, Tiffanie received the Jeannie Peeper Award for Outstanding Individual Fundraising Award in recognition of her fundraising efforts over the years. Tiffanie has raised funds and awareness selling Bee-lieve in a Cure Honey for the last nine years. She has been involved in fundraising car washes, gaming tournaments, and online campaigns. She also serves on the IFOPA’s Fundraising Committee, encouraging and supporting other families in their fundraising efforts.

Tiffanie is excited to join the Board of Directors to help improve the quality of life for people living with FOP, support the families, and find effective treatments and, someday soon, a cure.