We are pleased to announce the 2025 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 76 other individuals and groups honored with this award since 2010. 

The 2025 Jeannie Peeper Awards Committee included Jeannie Peeper, Helen Bedford-Gay, Steve Eichner, Chrissy Flexer, Nadine Großmann, Brian Harwell, and Michelle Davis. Of note: The Jeannie Peeper President's Lifetime Achievement Award is solely selected by the IFOPA's Founder, Jeannie Peeper.

Congratulations to the 2025 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: Mark Gambaiana

When Mark Gambaiana’s grandson Lincoln was diagnosed with FOP in April of 2009, the unknowns were overwhelming. But after connecting with the IFOPA and meeting Jeannie Peeper, Mark was ready to take action. 

“Our family is not the type to sit on the sidelines and observe,” he says. Quite the understatement! Since Lincoln’s diagnosis, Mark and his family have championed the cause of FOP. And Mark, in particular, has since devoted his life to the FOP community and searching for a cure. 

Throughout his five years on the Board of Directors, Mark served as the Secretary, Vice Chair, and Chair. He’s also served on multiple committees, including the Executive Committee, Fundraising Committee, Board Development & Nominating Committee, and the 2015 Strategic Planning Committee. He and his wife Robin are also members of the Focus On Possibilities monthly giving program and members of the Jeannie Peeper Heritage Roll of Honor for the planned gift they have committed to. 

“Once you look beyond the difficult realities of Lincoln’s diagnosis, so many blessings have come about as a result,” Mark says. “We have a close-knit family, but his condition brought us even closer. It has made me a better person, reset my priorities, softened my heart, and opened my eyes to others who are facing trials and adversity. And it has introduced me to a second family I never knew I had. I’ve met more than 100 FOP members and their families at various IFOPA events or at their homes.”

Beyond his years of service on the Board and many committees, Mark and his family have been dedicated fundraisers—raising more than one million dollars.

“I am incredibly proud that after 17 years of fundraising, we have surpassed the million-dollar mark in resources generated for the IFOPA,” Mark says. “100% of those funds went to the cause; our costs to raise a dollar were zero. It is a testament to our family members and friends who have stood shoulder-to-shoulder with us through emotional support, prayers, and financial resources.” 

Mark has been a loyal, generous, enthusiastic friend to the IFOPA and the entire FOP community. His years of service and fundraising efforts have advanced our research, strengthened our community, and paved the way for a brighter future for everyone impacted by FOP. To honor his efforts, we are proud to present him with the President’s Lifetime Achievement award. 

“Jeannie is one in a million, maybe one in ten million,” he says. “Her impact on the IFOPA and the community is inestimable. She is one of the most inspirational people I’ve met in my lifetime—a person of faith, compassion, graciousness, love, hope, and endurance. As our family advanced through the many stages of the condition, Jeannie always helped us face the next chapter with information, courage, and genuine care. We draw strength from Jeannie’s example and leadership. It is truly an honor to receive this recognition that bears her name.”

Thank you, Mark, for also demonstrating great courage and care! 

Inspiring Leader: Kathleen Degenhardt

When Kathleen Degenhardt was born, her parents quickly noticed the hallmark symptom of FOP: malformed big toes. Doctors dismissed their concerns until Kathleen had trouble straightening her left leg at six months. It would take an unnecessary surgery and multiple doctors to finally receive an accurate diagnosis at the age of four. 

Kathleen enjoyed a typical childhood, playing alongside her four siblings on their farm in northern Saskatchewan—riding tractors, fishing, swimming, riding horses, tobogganing, and taking care of their animals. She graduated from high school as the valedictorian and started her first job at the local credit union. In 2013, she started working as a medical transcriptionist, a job that would allow her to work from home as FOP symptoms progressed. 

She lives with her parents on their farm, which they have renovated to make it more functional over time. After a hip flare-up, Kathleen can no longer stand or sit unassisted and relies on hired helpers for daily support. She started using her first power wheelchair in 2024, which has given her the gift of more freedom and independence. 

Through every stage of her journey with FOP, Kathleen has been passionate about inviting others in and encouraging fellow members of the FOP community. 

“I really enjoy raising awareness for FOP, sharing my life and challenges living with a rare disorder, as well as participating in clinical trials so a cure or treatment can hopefully be found,” she says. “I feel it is important for others to know that even with a disability, we can live a somewhat normal life and still enjoy the same things as everyone else does.”

Kathleen currently serves on the Canadian FOP Network Board as its social media ambassador, creating a new logo for the organization, launching its first newsletter, and helping run campaigns. On her personal social media, she’s very active—sharing about FOP Awareness Day and encouraging others to take advantage of IFOPA programs. She has also participated in the Ability Toolbox program, the Thomas Jefferson University WILL project, and as a speaker in a continuing medical education (CME) program for healthcare providers. We were honored to have her on the Awareness Day committee in 2024 and 2025. 

In honor of Kathleen’s tireless and joyful service, we are proud to present her with the Jeannie Peeper award for Inspiring Leadership. She leads by example and is quick to offer her support to anyone who needs it. It feels fitting to end her bio with her advice to newly diagnosed families: 

“You are not alone. There are many, many older FOPers who can help with any questions one may have. We have all been there in the early days, where you feel lost and ask, ‘Why is this happening to me?’ Take one day at a time. Enjoy doing all the things you can and ask questions for tips and tricks on how to navigate this journey of living with a very rare disorder that most people have never heard of.”

Emerging Leader: Isla Williams

“Even though I’m only 11, I believe kids can help change the world, too.” 

Isla Williams is certainly on track to change the world. She was diagnosed with FOP as a baby but hasn’t let her symptoms stop her from living a joyful, meaningful life. She enjoys a wide range of activities—from riding her adaptive trike and swimming to training her puppy, choreographing dances for her sister and friends, and, most recently, writing lyrics and recording a song cover.

She is also a determined advocate for the FOP community. She regularly fundraises for the UK’s FOP charity, FOP Friends, in addition to other causes she’s passionate about, including Quest, her local Riding for the Disabled Group, and other local charities that support children with disabilities. 

Last year, Isla received the Quest Riding for the Disabled Association (RDA) Zac Galt Memorial Trophy, which recognises riders and participants who demonstrate determination and perseverance in overcoming challenges and obstacles that life may have thrown their way.

Isla has appeared on the popular UK morning show “This Morning” and participated in the Tin Soldiers documentary to raise awareness of FOP. In honor of these efforts, she received the Junior Windlesham Parish Council Community Award earlier this year. 

“When I talk about it, I feel like I’m helping others understand what it’s like to live with FOP,” she says. “I want people to be kind, curious, and supportive—not just to me, but to everyone who has FOP. If more people know about it, maybe one day we can find a cure.”

At the IFOPA, we are proud to join many other organizations in recognizing Isla’s dedicated advocacy and her potential as an Emerging Leader in our community. 

“It’s such an honor to receive this award, and I feel really proud,” Isla says. “Jeannie Peeper is someone I look up to because she’s shown how much one person can do. Getting this award makes me feel seen, and it reminds me to keep using my voice to help others.” 

Congratulations, Isla! We are so proud of you, and we look forward to what you will do next.

Outstanding Individual Fundraising: Kelly Griego

In October of 2016, Kelly Griego received a life-changing call: His friend’s son had just been diagnosed with FOP. When his friend, Kyle Wallace, asked him to join their fundraising efforts, Kelly was already one step ahead of them. 

He had recently signed up for an Ironman and decided to use the competition as an opportunity to raise awareness and funds for the FOP community. That fundraiser was the first of many. Since January 2017, Kelly has raised more than $30,000 through 12 races using the hashtag
#MovingToKeepEliMoving. 

From a marathon in his backyard during the early days of COVID to racing as a guide to blind athletes, there have been countless special moments and incredible achievements throughout his fundraising journey. 

“My biggest hope is that someday soon, when I’m making a donation to the IFOPA, I won’t see a box for research,” Kelly says. “There may be a box for the FOP Registry, there will be a box for family gatherings and support, but there won’t be a need for research for a cure.”

Through his friendship with the Wallaces, Kelly has become a loyal supporter of the IFOPA, serving on our Finance Committee and offering invaluable advice to others just starting out in their fundraising.   

“Don’t be afraid to start. If you try something and you raise $19, that’s not a failure. It’s $19 that wasn’t there before you tried,” he says. “Fundraising gives the things I love purpose, it gives them meaning, it gives them connection. Take something you love to do and give it purpose; find a way to give it away.”

To recognize Kelly’s incredible contribution to our search for treatments and, one day, a cure, we are proud to honor him with the Outstanding Individual Fundraising award. 

“Learning about FOP and becoming a part of the IFOPA family has been all the honor I’ve needed,” Kelly says. “The hugs, the sharing of medals with Eli—those moments have kept me moving forward and keep me inspired to do more. This recognition is humbling. When Michelle called and told me I was nominated, I really couldn’t say anything; I just cried. All of those moments I’ve loved about fundraising, the human connection, the shared moments with the Wallaces, my family being a part of it all; it all just hit me at once.”

Thank you, Kelly, for the more than $30,000 you have raised and for your continuous commitment to the FOP community! 

Outstanding Community Service: Marilyn Hair

Since her daughter Sarah’s FOP diagnosis at four months old, Marilyn Hair has been a fierce advocate not only for her own daughter but on behalf of the entire FOP community. 

Marilyn’s rewarding careers in ministry and public health equipped her to be an empathetic, dedicated volunteer. She began her career as a United Methodist pastor, serving churches in Wisconsin for 20 years. Ten years after moving with her family to Seattle, she went back to college to study biology and earned a master’s in public health. She worked in a federal research center at the University of Washington until her retirement in 2017. 

Marilyn’s family didn’t learn about the IFOPA until six years after Sarah’s diagnosis, but they quickly found an understanding supportive network. “Beginning with the first symposium in 1991, the IFOPA and particularly other FOP families became our lifeline,” Marilyn says. “We attended IFOPA events for vacations and made friends with FOP families all around the world. The IFOPA gave us a community.” 

Marilyn immediately began volunteering in 1991, serving as a member of the Board of Directors, as Board Chair and as the U.S. representative of the International Presidents’ Council. She also helped develop the program that would become the Harold and Elaine Kaplan Quality of L.I.F.E. Awards. Her book, What is FOP? Questions & Answers for the Children, was illustrated by children with FOP and has been translated into numerous languages by members of the FOP community. 

Marilyn’s family sadly lost Sarah in 2017 at the age of 32. Despite her aggressive FOP symptoms, Sarah led a vibrant life—involved at her church, graduating from high school and college, and enjoying her friends, family, and beloved service dog, Beauty. 

In 2018, Marilyn began facilitating meetings for FOP Bereaved Families, an online group that meets monthly and hosts a Facebook page for community members who have lost loved ones to FOP. Like all of us, being a bereaved family member was something she never wanted to be, but the Bereaved Families group is something she has felt privileged to lead—hearing the stories of other bereaved families and sorting through our grief and regrets together. The FOP Bereaved Families group, like the IFOPA, brings together people with common experiences. “It has given me a way to continue to serve the FOP community.”

“Since my personal journey with FOP has ended, I am surprised to be awarded the Jeannie Peeper Award for Outstanding Community Service,” Marilyn says. “I feel renewed connection to the whole FOP community and am ever grateful for this honor.” 

Congratulations to Marilyn on a well-earned and much-deserved award! Your faithful service has impacted our entire community for the better. We are grateful to count you, Sarah, and your entire family as treasured members of our FOP community.

Outstanding International Leadership: Elisabeth Marelise W. Eekhoff, MD, PhD

Marelise Eekhoff, MD, PhD, started her medical career researching the rare bone disease Paget’s disease during her endocrinology residency. She then joined Leiden University Medical Center as a junior endocrinology staff member. Since 2002, she has worked at the Amsterdam University Medical Center, where she’s now a Full Professor of Rare Diseases in the Amsterdam Bone Center. Marelise met her first patient with FOP in 2012. 

“I was shocked by the severity of the disease and touched by the hope and zest for life the patients felt,” she says. 

She immediately wanted to join research efforts, but her colleagues warned her not to interfere too much because there were no drugs to stop the progression of the disease. Thankfully for the FOP community in the Netherlands and around the world, Marelise didn’t listen to them but was actually encouraged by them to help develop treatments and find a cure.

She didn’t just start caring for people living with FOP, that same year, she established the European Consortium on FOP, kicking off more than a decade of FOP advocacy and research. 

Marelise has been a key leader in Europe. As a member of the international STOPFOP Consortium, she was the driving force behind the use of new diagnostic tools ([18F]NaF PET/CT) and clinical trials, including the STOPFOP trial’s submission to the EU Innovative Medicines Initiative. She has offered multiple clinical trials at Amsterdam University Medical Center, and has served as the lead Principal Investigator of the STOPFOP trial. Alongside the consortium, she sought additional funding sources and facilitated the participation of patients who lived outside of the Netherlands and Germany. 

Marelise is a key collaborator with the Dutch FOP Foundation—advising them and helping organize symposia. She also attends many family gatherings and supports clinics in other countries in Europe and the UK. She is also a close collaborator with the IFOPA—organizing presentations at the Family Gathering and helping develop educational webinars and resources for families. Marelise has collaborated on educational films about FOP, raising awareness of the disease itself and the need for interdisciplinary support to advance research.  

She is the Vice-Chair Elect of the International clinical Council on FOP, an autonomous and independent group of internationally recognized physicians who are clinical experts in FOP. 

Marelise shared, “It's a tremendous honor to receive this renowned Jeannie Peeper Award. This special recognition inspires my work to continue collaborating with patients, researchers, and pharmaceutical companies worldwide to find a cure for FOP.”

Congratulations to Marelise on being named the Outstanding International Leadership awardee! Thank you for caring for FOP families when others discouraged it as a focus of your work. And thank you for pouring your time and talent into researching ways to make their lives better, not just in the Netherlands but around the world.