We are pleased to announce the 2022 Jeannie Peeper Award winners! The Peeper awards recognize those who have made exceptional contributions to the worldwide FOP community through their leadership and service in raising FOP awareness, supporting patients and families and raising funds to support the IFOPA’s vision to cure FOP. This year’s winners join 55 other individuals and groups who have been honored with this award since 2010.
The 2022 Jeannie Peeper Awards Committee included Jeannie Peeper, Steve Eichner, Gretty Emmerich, Nadine Nadine Großmann, Nancy Sando and Michelle Davis.
Congratulations to the 2022 winners whose gifts of time, talent, experience and selflessness have made an incredible impact on the FOP community. Learn more about them through their stories below.
|President's Lifetime Achievement
||Outstanding Community Involvement - Group||Outstanding Community Involvement - Individual||Outstanding International Leadership||Inspiring Leadership|
|Frederick S. Kaplan, M.D.||Kyle Brinkman & Aarti Madan
Paul & Maureen Brinkman
|Suzanne Hollywood||Christiaan Scott, MBChB, FCPaed (SA)||Joe Sooch|
President's Lifetime Achievement: Frederick S. Kaplan, M.D.
For many, it’s difficult to imagine a time when Dr. Fred Kaplan wasn’t the expert on FOP. But of course, he had to start somewhere. He learned about FOP as a medical student in the 1970’s. But it wasn’t until 1988 that Dr. Kaplan met the patient who would change his life.
“I was introduced to a two-year-old child with FOP. That singular event altered the course of my career,” he recalled. “I could see in real-time, not just what FOP had done, but what it was doing to a little child. From that day forward, I was committed to asking questions and finding answers.”
Dr. Kaplan was determined, not only to understand the science of FOP, but also the human experience behind it. For more than three decades, he has built lasting connections within the FOP community to better people’s lives in countless ways.
“The first FOP event I attended was an informal family gathering in Florida in 1991. That’s when I met Jeannie!” he said. “I interacted with the families. We shared stories and bonded. It was truly an amazing experience that had a profound effect on me.”
Ever since, Dr. Kaplan has created countless memories with patients and families from around the world.
“The stories weave an incredible tapestry of my personal journey and our shared journey as a community,” he said
That decades-long journey has transformed the FOP research landscape and quality of life for those touched by the condition.
‘An international powerhouse’
With help from others, including his mentor Dr. Michael Zasloff, Dr. Kaplan and his colleague Dr. Eileen Shore have realized remarkable progress on a global scale.
“During the past 34 years, we have moved from the wastelands of a little-understood rare disease to the watershed of clinical trials,” said Dr. Kaplan. “We have identified the genetic cause of FOP and have used that knowledge to spearhead worldwide research to develop therapies that will transform the lives of individuals with FOP.”
Dr. Kaplan is encouraged by these “dazzling” discoveries, as he describes them. He explained that they have expanded the frontiers of drug discovery and development and inspired research into small molecules, antibodies and gene therapy.
“And while all this was happening, the research and tiny FOP patient communities grew into an international powerhouse fueled by a common goal,” he explained.
‘The engine that drives all we do’
Shortly after his first informal gathering all those years ago, Dr. Kaplan and Dr. Zasloff organized the first International FOP Scientific and Clinical Symposium in Philadelphia where attendees “declared war on FOP.”
Since then, Dr. Kaplan explained, there have been many symposiums, forums, fundraisers and family gatherings, each helping to unite the community, ignite change and continue the war on FOP.
“It feels like a family—all marching in the same direction—all powerful and inspiring,” he said.
Although researchers and clinicians have shepherded promising discoveries, Dr. Kaplan credits the special patient community with the unprecedented developments realized in a relatively short amount of time.
“Patients and families are the engine that drives all that we do and all that we want to accomplish,” he said. “FOP has gone global and has a very real presence on the world stage, but it is still a village in the best sense—I never want that to be lost.”
‘The wheels have been set in motion, and it will happen’
Dr. Kaplan’s scientific contributions to unlocking FOP cannot be overstated. Nor can the personal impact he’s had on so many. His tireless work has fueled life-changing progress and his generosity of time, comforted and uplifted families.
For these contributions, the IFOPA is honored to present Dr. Kaplan with this year’s Jeannie Peeper Lifetime Achievement award. Upon learning about it, Dr. Kaplan described the honor as an “unfathomable tribute from an extraordinary individual.”
“Ever since I met Jeannie in 1991, she had the quiet and powerful voice that has motivated every step of my lifelong journey with FOP,” he said. “She had the incredible vision to establish the IFOPA to end isolation and to realize that a problem as rare and complex as FOP had to be approached through research.”
Research, Dr. Kaplan explained, that few believed in early on.
“Other doctors laughed at us, saying we’d never figure it out,” he recalled. “But Jeannie did not laugh. She understood what we were trying to do.”
Years later, Dr. Kaplan has not let up on his dream of finding a cure.
“Patients are the reason, the strength and the inspiration to work for a better future,” he said. “A cure for FOP was a distant dream long ago. It’s closer now. The wheels have been set in motion, and it will happen.”
Dr. Kaplan stresses, that dream would not be in such close reach without support from Dr. Diane Weiss, who established the Isaac & Rose Nassau Professorship of Orthopedic Molecular Medicine, the position Dr. Kaplan holds today at The University of Pennsylvania. Additionally, support from the Cali, Weldon, Snow, Scoble, Martucci, Bogard and Whyte families, among many others, has been crucial.
Dr. Kaplan’s insistence that it has been the work of many—from patients and families to mentors and colleagues—speaks to the power of the FOP community; a power he hopes endures.
“There is a danger in losing our village mentality if we don’t hear and listen to one another,” he said. “We all—clinicians, scientists, researchers, patients and families—are united by a common bond: to make life better for those who have FOP.”
The IFOPA is deeply grateful for the profound and life-changing impact Dr. Kaplan has made on the FOP community. His compassionate leadership, dedication and tenacity have inspired hope and optimism and created real change. Thank you, Dr. Kaplan, and congratulations on an extraordinary journey that is still unfolding.
Outstanding Community Involvement Award (Group): Kyle Brinkman & Aarti Madan and Paul & Maureen Brinkman
When their daughter Sona was diagnosed with FOP at the age of five, Kyle Brinkman and Aarti Madan jumped into action.
“We were immediately focused on how we could help find a cure and a treatment,” they said.
As they learned about FOP and met with scientists, physicians and other members of the FOP community, Kyle and Aarti were encouraged. But they found quickly that funding was an issue.
“The need was clear, but how to pick the best research to support and how to marshal enough funding to make a significant impact over time was more difficult,” they said. “We saw an opportunity with the IFOPA to bridge some of those gaps.”
Kyle and Aarti began conversations with several people, including Betsy Bogard, who at the time, was the IFOPA Research Committee Chair. They noticed other organizations that had competitive grant programs to drive research. They realized the IFOPA could do something similar.
In 2015, Kyle and Aarti led the launch of the Accelerating Cures and Treatments for FOP Grant Program (ACT for FOP Grants) and incorporated Betsy’s suggestion to involve a Scientific Advisory Board. Each grant submitted is reviewed by a team of experts to assess the likelihood that the project will make a significant advancement.
Kyle and Aarti are encouraged by the progress they’ve seen in the past seven years. As they continue to advocate for Sona and the entire FOP community, they know they are not alone.
Strength in Numbers
When Sona’s grandparents Paul and Maureen Brinkman learned about her diagnosis, they were ready to get to work as well.
“At first, we were saddened and devastated,” they shared. “Then, we asked, what could we do? How could we help? And there was the IFOPA…there was a path forward.”
Paul and Maureen’s first in-person experience with the IFOPA was at the 2014 FOP Drug Development Forum.
“It was such an eye-opener, and we met so many wonderful people,” they shared.
Since then, both have volunteered with the IFOPA. Maureen served on the Research Committee and has volunteered for special projects and focus groups, while Paul served on the IFOPA’s Finance, Research and Strategic Planning Committees as well as the Board of Directors. Paul also served as Secretary, Vice Chair and Board Chair. Over time, they built relationships with others who inspire them, including Jeannie Peeper.
“Meeting her was truly a moving experience,” said Paul.
They also recalled spending time with Amanda Cali and her family and how special it was to meet Betsy Bogard and her brother Jud, who had FOP.
“Every story becomes personal, and therefore, meaningful,” they explained. “Getting to know patients and their families reinforces our commitment to the cause we all share.”
A cause that the entire family is hopeful about.
“The power of working together toward a common goal”
The Brinkman and Madan family knows that connection and cooperation can lead to incredible progress. Years volunteering with the IFOPA have proven that.
As a long-time member of the Research Committee and a new member of the IFOPA Board, Kyle cherishes the opportunity to work with others who share his goals. Aarti also volunteers and feels the same way. Like Maureen and Paul, they believe volunteering is a great way to stay connected. The teamwork fuels motivation and hope for the entire family.
“It’s really the power of working together toward a common goal,” said Kyle and Aarti. “Even though the FOP community is very small, we punch well above our weight in terms of visibility to researchers, pharma and regulators because of the dedication and commitment of the organization.”
Paul and Maureen agree, “every bit of connection adds another piece to the puzzle. Some pieces are bigger than others, but all are important.”
The family is hopeful that the community’s special ability to work together will lead to a cure. In the meantime, they continue to help in many ways, which is why the IFOPA is thrilled to award the family with this year’s Outstanding Community Leadership (Group) award.
After learning about the honor, Paul and Maureen insisted on recognizing others’ contributions.
“We would like to express our sincere gratitude for all those who have worked to defeat or at least mitigate the effects of FOP and acknowledge the contributions made by friends and members of our extended families,” they said.
“It’s really an affirmation of the work we’re all doing together,” added Kyle and Aarti.
The IFOPA deeply appreciates and admires the family’s dedication to realizing a better future for Sona and everyone else touched by FOP. Congratulations on the amazing progress made!
Outstanding Community Involvement Award (Individual): Suzanne Hollywood
FOP mom Suzanne Hollywood remembers feeling “sheer terror” when she learned her four-year-old son Joe had FOP. Since that day in 2011, Suzanne has turned to the IFOPA for answers and support.
“The IFOPA has been very important throughout Joe’s journey. In the beginning, it supplied me with information and resources,” she said. “It continues to be my first source for updates on clinical trials and what is happening in our community.”
In the decade since Joe’s, diagnosis, Suzanne has taken an active role with the IFOPA. She has served on various committees, turning her concern into action.
“I believe each person’s contributions make a difference,” she said. “If you want to see progress, you should be part of the process.”
In addition to volunteering her time, Suzanne is passionate about fundraising, explaining, “FOP is so rare. We don’t get funded like a lot of the more common diseases. So, I need to do something—my son’s future depends on it.”
Despite—and because of—uncertainties, Suzanne makes it a point to comfort and uplift families, the same way others did hers.
Help following a ‘life-changing diagnosis’
Shortly after Joe’s diagnosis, Suzanne met several FOP moms who offered support and guidance.
“I felt like I was thrown a life jacket. I could ask any and all questions of people going through the same experience,” she said. “These moms continue to be some of my dearest friends…a bond not broken.”
Today, Suzanne says, she tries to “pay it forward.”
“I want to help and welcome new moms and dads when their child gets that life-changing diagnosis. I don’t want them to feel alone,” she explained.
Although an FOP diagnosis is difficult, Suzanne is encouraged by recent progress.
“My involvement with the IFOPA began in 2011. The changes since then have been significant,” she said. “The focus on information, services and support for FOP families is absolutely wonderful.”
Additionally, Suzanne is optimistic about the research that is underway.
“We are hopefully on the brink of having the first drug to treat FOP approved, and there are additional trials happening,” she said. “I’m aware this takes time, but when Joe was diagnosed, there wasn’t a single clinical trial.
“Today, there are so many people working toward a cure. It gives me something very important…hope.”
“Forging a path forward…”
Suzanne’s enduring relationships with others in the community continue to offer another source of encouragement and motivation.
“The human connection is powerful. As you listen to the stories of others, you learn so much and don’t feel alone,” she said.
“I met Jeannie Peeper and Amanda Cali at the first IFOPA event I went to. These wonderful women have changed my life. Besides becoming two of my most cherished friends, they guided me in forging a path forward to make a difference.”
Suzanne is certainly helping blaze a more hopeful path forward through her volunteer and fundraising efforts. The IFOPA is thrilled to present her with this year’s Outstanding Community Leadership (Individual) award.
“I am tremendously honored to receive this award,” she said. “I have so much respect for the people who have been honored previously. To be in the same category with them is a huge compliment.”
Congratulations, Suzanne! We are grateful for your determination and steadfast support.
Outstanding International Leadership Award: Christiaan Scott, MBChB, FCPaed (SA)
Christiaan Scott, MBChB, FCPaed (SA), is the director of the University of Cape Town Clinical Research Center and a pediatric rheumatologist at the Red Cross War Memorial Children’s Hospital, both in South Africa. Throughout his career, he has developed special interests in a few areas, including FOP.
Today, a leader in his field, it is hard to imagine a time when Dr. Chris Scott wasn’t familiar with the condition. But early on, that was exactly the case.
“I first learned of FOP when our local neurology consultant referred a patient to me. The diagnosis was unclear, so I did some research and contacted Dr. Fred Kaplan, who with his usual kindness and vigor, responded immediately and warmly,” Dr. Scott recalled.
“From there, I was invited to attend FOP meetings and was drawn into the amazing FOP community, which has changed my life!”
Dr. Scott remains a dedicated advocate for those living with the condition. He is active within the IFOPA, serving as the vice chairperson of the International Clinical Council on FOP. Dr. Scott is also the founder of the FOP Africa association, which has one of the largest undiagnosed patient cohorts in the world.
And in 2019, he was part of a team that released the Tin Soldiers documentary film. Highlighting the personal journeys of several people with FOP, its makers hope to spread awareness and find others who are suffering but remain undiagnosed.
Through his experience, both with the IFOPA and Tin Soldiers, Dr. Scott has met “some of the most wonderful people on Earth” and witnessed FOP in different contexts. This knowledge has only enriched his ability to help patients on a personal level, which Dr. Scott says is the most important aspect of his work.
“My most meaningful experience has been my journey with the families that I have cared for as a doctor,” he said. “There are few things as important as the full journey from diagnosing a young child to walking a path with them through adulthood.”
Currently, Dr. Scott facilitates the conduct of nearly 40 clinical trials in his role as director of the clinical research center. Well-versed in the field of medical research, he is optimistic about recent progress regarding FOP. He believes the community’s shared commitment to realizing a better future is largely responsible for that progress.
“I’m encouraged by the open relationships between the patient and healthcare communities, as well as the selflessness of physicians and advocates in the field, who put aside narrow goals in favor of making progress together to find the best way to help people with FOP,” he said.
In Dr. Scott’s opinion, it is this shared purpose between patients, clinicians and researchers around the world—as well as strong leadership—that sets the FOP community apart.
“The FOP community has achieved this cooperation in a way that I have not experienced in any other,” he said. “I think it comes from its leaders—from patient advocates to healthcare workers—who have generated this philosophy.”
He continued, “This cohesion and strength of purpose has contributed to the incredible pace of development in the FOP space and era of hope we find ourselves in.”
Dr. Scott has undoubtedly played a role in moving things forward. In recognition of his work and dedication, the IFOPA is honored to present Dr. Scott with this year’s Outstanding International Leadership award.
Upon receiving it, he said, “I am totally humbled and could so easily recommend a number of people who are more deserving. I see this award as a shared achievement with all those I work and interact with in the FOP context every day.”
“I would like to thank those who taught me so much and led me in this journey. I wish to share this recognition with all my friends in the FOP world.”
We congratulate Dr. Scott and appreciate his contributions. The future for those living with FOP is most certainly brighter thanks to his tireless work alongside other leaders in the field.
Inspiring Leadership Award: Joe Sooch
By the time Joe Sooch was three years old, his father suspected he had FOP.
“The toes were the ultimate indicator,” Joe Sooch recalled.
He received an official diagnosis from Dr. Fred Kaplan and began figuring out how to navigate the world with FOP.
Now an adult, Joe Sooch is extremely active online. Before finding his voice there, Joe Sooch didn’t see anyone else with his same flair speaking up on behalf of the FOP community. He recognized an opportunity both for himself and others with the condition.
On his podcast “Two Mics, One Joe Sooch,” YouTube page and other social media platforms, Joe Sooch spreads awareness in unique ways. From starting difficult discussions to sharing raw images and stories to celebrating milestones, Joe Sooch covers it all. He does so with honesty and authenticity, staying true to himself.
“I don’t really care what people think. I release content that makes me happy and is also realistic,” he said. “I like storytelling, and this is my life.
“I can express who I am and release my creativity,” he continued. “It’s just lucky that I have this drive along with this disability—it’s become a win-win for me, personally and for the disabled community.”
Joe Sooch harnesses the power of social media, not only to tell his story, but to provide a space where others can find answers and support. For instance, during his recent podcast episode “Rare Disease Mom Talking to Rare Disease Adult” he talked candidly with FOP mom Lara about experiencing the condition from different perspectives, not shying away from hard topics.
“The episode answered questions that nobody else would address publicly,” he said.
Joe Sooch also used his platform to support the IFOPA’s In Pursuit of a Cure 2021 and 2022 Campaigns. During an “Ask Me Anything” Reddit session, Joe Sooch answered questions about living with FOP, asking people to give to the campaign in return. He raised nearly $5,000.
It’s this willingness to have honest conversations that makes Joe Sooch such an effective FOP advocate and the recipient of this year’s Inspiring Leadership award.
After learning about the honor, Joe Sooch said, “I feel great and validated that somebody is seeing all the work I’m doing.”
Work, he joked, that deserves additional praise, “My hope is to see a golden statue of me in the IFOPA offices…and of Dr. Kaplan. I hear he’s important, too.”
He continued, “Everybody, keep doing your own thing. We all have the same goal—a gold statue of me! I mean…first, a treatment. Then, we can focus on the statue.”
No doubt, Joe Sooch’s candor, coupled with an unmatched sense of humor, are helping to raise awareness, inspire and connect others around the world. We congratulate Joe Sooch and admire his drive to share his story in such creative ways.
You can follow him on YouTube at Joe Sooch.