Each member of the IFOPA’s Board has a unique professional background and connection to FOP, but they’re united in their passion for driving research, advancing treatment options and supporting families.

Each Board member is elected by a vote of the membership and can serve up to two three-year terms. We’re so excited to welcome Manuel Robert, Sue Kahn, Molly Rhodes and Jamal Porter who each bring invaluable perspectives to our community. 

Manuel Robert

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. 

Sue Kahn

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

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.  

Jamal Porter

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 United States, 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.

Manuel, Sue, Molly and Jamal join 11 other Board members, including:

Rebecca Wallace, Board Chair; Wisconsin, United States; mother of a child living with FOP
Nadine Großmann, Board Vice Chair; Germany; living with FOP
Emma Albee, Board Secretary; Maine, United States; Secretary; living with FOP
Hollie Schmidt, Research Committee Chair and Executive Committee Member-at-Large; Massachusetts, United States; FOP advocate
Helen Bedford-Gay; England; mother of a child living with FOP
Kyle Brinkman; California, United States; father of child living with FOP
Chrissy Flexer; Pennsylvania, United States; aunt to teen living with FOP