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.

Rebecca Wallace

Board Chair

Rebecca’s son, Eli, was diagnosed with FOP in 2016 at the age of seven. The IFOPA was an invaluable resource right from the start, so Rebecca and her family wanted to give back. Through their organization, One Rare Boy, they have raised awareness and funds with events such as art auctions, birthday brews, bike rides, and yoga gatherings. Eli’s dad, Kyle, joined the IFOPA Research Committee and Rebecca is a FOP Connect mentor and member of the IFOPA Advocacy and Awareness Committee.

During her 18-year career as a science writer and communications specialist for the US Forest Service, Rebecca has developed the keen ability to present highly technical information in a way that a broad and diverse audience can understand. She brings these skills to the board with the goal of continuing to foster and grow knowledge and relationships within the FOP community.

“The IFOPA can be seen a central point around which our FOP family can gather,” says Rebecca. “I hope to help share the wealth of information available to ensure everyone touched by FOP feels supported and connected on this journey.”

Nadine Großmann

Vice Chair

Nadine Großmann was correctly diagnosed with FOP at the age of 15 in 2007, but it took seven more years until she learned about the IFOPA and other national organizations, such as FOP Germany.

After enrolling in the Master’s Program “Molecular Medicine” and writing her thesis about an FOP-related topic, she attended the IFOPA's Drug Development Forum in 2017 and shared her story for the very first time on the patient panel. Subsequently, she became more and more involved in volunteer work for the IFOPA, became the Vice Chair of the German FOP organization board and the International President's Council representative for Germany in 2018. In 2019 she continued her scientific career in the FOP field as a doctoral candidate. As of today, she is serving on several committees at the IFOPA.

She is determined and dedicated to doing her part to help find a cure for FOP and to raise as much awareness and funds as possible to educate people and to identify the yet undiagnosed. She has done a few fundraising events and has given a number of interviews for national and international magazines and newspapers and was also filmed twice by German TV stations.

Nadine is excited to contribute her expertise as both, a patient with FOP and an FOP researcher (a unique combination) to the Board of Directors.

Emma Albee

Secretary

Emma was diagnosed with FOP at the age of 9 in 1998. FOP progressed quickly and she had to use a wheelchair to get around a year after her diagnosis. For the few years after her diagnosis, Emma and her family did a lot of fundraising in the community including dinners, yard sales, and a concert.

Emma went to college and got her degree in Medical Biology. She now works at Acadia National Park in Maine and lives with her family. She enjoys making greeting cards using stamps and watercolors.

Emma believes it is a very exciting time in the FOP community with all of the advances in research. She has attended many IFOPA gatherings and realizes the importance of the family gatherings to bring together the community and to communicate the important information about the current and future research.

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 17 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 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 19 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 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 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.

Kyle Brinkman

Board Member

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.

"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."

Chrissy Flexer

Board Member

Chrissy is known as “Aunt Chrissy” to Joshua Scoble who was diagnosed with FOP at three months old. A people person and organizer, Chrissy found it was a natural fit to assist in coordinating support efforts after Joshua’s diagnosis when many people were eager to help but didn’t know what to do.

Chrissy is director of concessions for a county agricultural society and fairgrounds which has one of the largest fairs in the state of Pennsylvania. She also has 10 years of experience working in customer data services.

She is currently the President of Joshua’s Future of Promises, a nonprofit organization she set up in 2008 to help with fundraising for FOP research. Joshua’s FOP now has more than 100 volunteers and has raised over $1 million.

Chrissy wants to help raise awareness and funds while ensuring proper plans are put into place to keep the IFOPA moving toward the end goal of finding a cure for FOP.

“I want everyone to know every penny helps and every donation gets us all closer to that goal. I know we’re making a difference and someday will find a cure!”

Sue Kahn

Board Member

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 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.

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 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 and spoke on the patient panel at the first FOP Drug Development Forum (DDF) in 2014, and again at the 2022 DDF. He now serves on the Family Services Committee and served on the Family Gathering Success Council in 2021.

He’s also committed to raising awareness in the general population, participating in a number of media projects, speaking at national events and serving as an author on the 2022 publication, "Current challenges and opportunities in the care of patients with fibrodysplasia ossificans progressiva (FOP): an international, multi-stakeholder perspective.” He hopes that with more awareness everywhere, people with FOP and their families will get to the correct diagnosis faster.

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 he is finishing a degree in mathematics at the University of Buenos Aires and enjoys playing board games with friends.