We are pleased to announce the 2024 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 69 other individuals and groups honored with this award since 2010. 

The 2024 Jeannie Peeper Awards Committee included Jeannie Peeper, Steve Eichner, Gretty Emmerich, Nadine Großmann, Nancy Sando 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 2024 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: Gretchen Emmerich

When Gretchen (Gretty) Emmerich was pregnant with her son in 1982, she was careful to follow all of her doctor’s rules. Like any newly pregnant mom, she remembers wanting to do "everything right" to give her son the best possible start to life.

She eliminated caffeine and alcohol, took multiple vitamins, followed a healthy diet and made sure she was getting enough rest.

When her son, Pat, was born, it seemed like all of her careful planning had worked. He was healthy and strong. Except for crooked toes and stiff thumbs, everything seemed perfect. Gretty’s doctors dismissed her concern about his toes and thumbs, but she couldn’t ignore her intuition that something was wrong.

After months of doctor's appointments, skeletal surveys and a genetic workup, Pat was diagnosed with FOP.

"I never felt so helpless or alone," Gretty said. " mourned the loss of an imagined future for Pat and our family. All the horizons of life were off-kilter. Facing the unknown while responsible for this precious child proved to be daunting and terrifying as a young mom."

Without Google at her fingertips or an organization like the IFOPA to answer her questions, the unknowns were infinite. In 1991, she attended a gathering at Penn Medicine where she met other families on the same FOP journey.

The next year, in 1992, she met Dr. Fred Kaplan. "Never before had I met anyone whose compassion and empathy were laser-focused on this rare condition," Gretty said. "Fred’s ability to dismantle my fears while developing a friendship with Pat bolstered my courage to learn more of what FOP might present for Pat’s future."

That same year, she also had the opportunity to meet and develop a friendship with Carol Orzel. It was the first time Gretty had met an adult living with FOP. Carol’s vibrant life gave her hope for Pat's future.

Encouraged by her encounters with Dr. Kaplan and Carol, Gretty started advocating for other families like hers — and has never stopped.

Gretty has played an invaluable role in the IFOPA and has served our community in a wide variety of positions, including on the Advocacy and Awareness Committee, Strategic Staffing & IT Committee, 25th Anniversary Committee and the Jeannie Peeper Awards Committee. For 10 years Gretty served on the Harold and Elaine Kaplan Quality of L.I.F.E. Awards Committee, most recently serving as Committee Chair until 2023. In 2012 and 2013, she also served on the Board of Directors.

She has also personally raised thousands of dollars. When Gretty married her now-husband John, the couple chose to spotlight the IFOPA at their wedding reception as one of several charities close to their heart.

Several years later, John raised $11,000 through a biking fundraiser to support the search for a cure for FOP.

Gretty has participated in numerous community events and fundraisers in addition to forming deep, lasting friendships with many families in the IFOPA. She's a fierce supporter of her fellow families with FOP and has always been an active member of our community.

When Pat was born, she had few resources to learn about this new rare disease that turned their world upside down. Forty-two years later, she's proud of the progress she's witnessed and helped make possible. Today, when parents receive an FOP diagnosis, there’s a wealth of information online including hopeful news of clinical trials, ongoing

"When people click on the link to the IFOPA they are greeted with headlines of hope, not fear," she said. "Volumes of data on worldwide clinical trials are at their fingertips. Dozens of programs and tools can be accessed and are managed and monitored by caring staff and personnel. I have personally experienced that pulse of hope that is the lifeblood of our community. I'm proud to know so many of the individuals in our FOP family whose efforts have made those differences."

In recognition of Gretty’s ongoing dedication to the FOP community and her passion for finding a cure, the IFOPA is proud to award Gretty with the President’s Lifetime Achievement Award.

"This award is humbling," she said. "Honestly, it must be said that I simply represent one of over 1,000 moms worldwide who are fiercely dedicated to loving their child in the best ways they can. Each of our stories of growth and courage are equal and arise from the same source of strength: love for our children."

Thank you Gretty for your tireless work toward a brighter future for everyone impacted by FOP! On behalf of our entire community, we are so grateful to you. Congratulations on this achievement!

Outstanding Individual Fundraising: Tiffanie Williams

When Tiffanie Williams’ active 6-year-old Daniel started complaining of pain in his side, she reassured him everything was likely fine. After he came home from kindergarten with a hard lump under his rib, she became more concerned.;

While they searched for answers, the lump morphed into a large swelling on his upper left back that wrapped around his body. X-rays caught nothing, prompting Tiffanie to schedule an appointment with a pediatric rheumatologist. The night before their hospital appointment, she stumbled across the IFOPA’s website in her frantic Google searching of his symptoms. The images of crooked toes and hard lumps were instantly familiar. In tears, she called Dr. Fred Kaplan, desperate for confirmation her son might have FOP.

Three months after Daniel first felt pain in his side, they were on a flight to Philadelphia to see Dr. Kaplan, where they finally received an accurate FOP diagnosis. Like many families, the Williams were relieved and overwhelmed. They connected with the IFOPA and started getting involved.

Since Daniel’s diagnosis in 2012, they have attended Family Gatherings, met other families with FOP, gained valuable resources from the Ability Toolbox, participated in the Caregiver Support Group, and stayed up to date on the latest research and news.

“Some of my friends have children with very rare disorders, and they don’t have an IFOPA for their community yet, so I certainly appreciate that ours is truly special and valuable,” Tiffanie said.

Early on in their journey with FOP, a friend in the FOP community advised her to hold off on fundraising. “I believe that was helpful because there is just so much to learn, absorb and process in those early months,” Tiffanie said. “But as time went on, I really wanted to do something to help the community and raise money for research.”

She prayed for an idea that would fit her family’s interests, feel manageable to plan and raise a significant amount of money. When her beekeeper friend asked if she’d like to sell honey as a fundraiser, Bee-lieve in a Cure was born in 2018.

They sold over 1,000 jars of honey within a week and raised more than $10,000 in the first year! They have continued to sell honey (including throughout the COVID-19 pandemic) and look forward to selling more for the holiday season this year.

She also serves on the IFOPA’s Fundraising Committee, pioneered the Gaming for a Cure fundraiser and actively fundraises for the annual In Pursuit of a Cure campaign. To honor Tiffanie’s faithful support of the FOP community and innovative methods of fundraising, we are proud to present her with the Jeannie Peeper Award for Outstanding Individual Fundraising.

“To anyone who is thinking about fundraising, I say we are here, ready and waiting to help you kick off a fundraiser that fits your family,” Tiffanie said. “There are so many ways to do this, and most of your friends, family and social network are happy to give if asked. So, we’re asking you to ask! If we want treatments and cures, we all need to invest in that potential. It takes a lot of time and money to turn that potential into a reality, so we encourage everyone to do something that can support it, no matter how big or small. Together, we can make every FOP life better and every future brighter.”

Thank you, Tiffanie, for all you have done and continue to do for the FOP community! You have brought us so much closer to more treatments and a cure!

Outstanding Group Fundraising: Brett Matlosz + Wet Brett Challenge/Care for Rare Team

Brett Matlosz felt helpless when his cousin, Sienna, was diagnosed with FOP at the age of two. His family took great comfort in connecting with the IFOPA and knowing there was an organization dedicated entirely to this rare disease. Through the IFOPA, their family has been able to meet other FOP families, discover helpful resources, attend conferences and get their questions answered.

But Brett wasn’t content with only learning about FOP; he was ready to make a difference — for Sienna and everyone impacted by FOP. When his family learned that swimming is an activity that individuals with FOP can still enjoy, they decided to host a swimathon at Princeton University, where Sienna’s mother swam competitively.

The fundraiser was a success, and it ended up being the first of many ways Brett and his family have creatively contributed to the search for a cure.

“There may be challenges in fundraising, and I have faced them myself, but nothing is insurmountable,” Brett said. “If you are faced with an obstacle in bringing your idea to life, be open-minded to transforming the event and pivoting if necessary. After having held four events, I can attest that each year, a new challenge arises. Just stay focused and solution-oriented, and you can make it happen.”

For a disease that affects one in a million people, amazingly, Brett has met two of them. During his first year at Newark Academy, his family participated in the 15th Walk for FOP, an event held at the school in honor of former student Ian Cali, who Brett previously met. When Brett found out the 15th year would also be the last, he knew he had to do something at Newark Academy to continue to support the FOP community, a cause that meant so much to his family.

“I couldn’t just let the cause end there,” he said. On a snow day in February, he thought of the perfect idea. He proposed a swimming fundraiser where the swim team would wear #cureFOP t-shirts during swim practice. The drag of the t-shirts would make practice more challenging, raising awareness of how FOP decreases mobility.

Once his fundraiser idea was approved, he filmed a brief video explaining FOP which he shared in front of the whole school. Swim clubs quickly joined in support, including the Princeton University club and varsity swim teams, where the first swimming fundraiser in honor of Sienna was held nearly 10 years prior.

The Wet Brett Challenge was a huge success and has now become an annual Care for Rare event at multiple locations. In the past three years, Brett has helped raise over $100,000 with the support of his school, club swim team, fellow swimmers and his coaches.

In honor of Brett’s tireless advocacy and fundraising efforts, we are proud to honor him with the Jeannie Peeper Award for Outstanding Group Fundraising.

“I am filled with gratitude to be recognized with such an honor,” Brett said. “I accept this on behalf of the whole Care for Rare Team – my family, my school Newark Academy, my fellow swimmers from across the United States, Metro Life Time Swimming, the multiple Princeton University club and varsity swim teams, our corporate sponsors WTEC and Berlet Plastic Surgery, and the very generous donors from my community and beyond. We have created a tremendous national movement that I hope will continue annually.”

Thank you, Brett, for honoring your cousin in such a special way and sparking a national movement to raise awareness of FOP. We are inspired and encouraged by your dedication to supporting the FOP community!

Outstanding Community Service: Elinor Bouvy-Berends DDS

Elinor Bouvy-Berends first heard about FOP from her patient, Stephen. In 1984, he walked into her dental office in Rotterdam, The Netherlands as a frightened 4-year-old boy. For the next 20 years, she learned about FOP and how to care well for patients with this rare condition.

“He told and taught me a lot about FOP,” Elinor said. “Especially about his trip to Philadelphia in the year 2000. There, he confidently proclaimed in the laboratory of Drs. Fred Kaplan and Eileen Shore that the solution would be found there.”

After Stephen sadly passed away in 2004, Elinor remained in touch with his family. At the recommendation of Stephen’s mother, Elinor spoke at the FOP Stichting Nederland FOP Symposium in 2009 and has been involved with the local FOP organization and the IFOPA ever since.

As a dentist informed about the nuances of treating patients with FOP, Elinor has been an invaluable resource for our community and a devoted advocate for improved care. She has spoken at family meetings in The Netherlands where she lives and in France and Germany. She also served as the President of the Dutch FOP Foundation and on the International Presidents’ Council for several years. In 2023, she attended the Medics4RareDiseases FOP event in the UK and came to the US Family Gathering where she spoke and led Ask-a-Dentist meetings with families. Elinor has also served as the president of the Dutch Association for Disabled People and Oral Health and, in 2005, was appointed Officer in the Order of Orange-Nassau by Queen Beatrix for her national and international achievements in the field of dental care for people with disabilities.

Though now retired as a dentist, she still works with the IFOPA and currently sits on the STOPFOP Clinical Trial Stakeholder Board. This summer, she attended the Drug Development Forum in Stockholm, which left her feeling inspired about the progress happening for individuals with FOP. “The number of clinical trials has increased,” she said. “More pharmaceutical companies are showing interest in FOP. New pathways are coming into view and bringing new hope to the FOP community.”

Informed, compassionate physicians, nurses and dentists like Elinor are crucial to the care of patients with FOP. We are so thankful for Elinor’s faithfulness in serving Stephen and our entire community. To recognize her decades of service, we are proud to present her with the Jeannie Peeper Award for Outstanding Community Service.

“This is very special to me,” Elinor said. “I have been honored for my activities in the field of dental care for people with disabilities by my dental colleagues. Now my involvement in FOP is being honored by the people with FOP themselves.”

Thank you, Elinor, for your excellent patient care and continued commitment to supporting the FOP community!

Outstanding International Leadership: Sunil Ladwa

When Sunil Ladwa’s daughter was diagnosed with FOP at the age of three, there wasn’t a local support group to answer all of their questions or help them process the daunting news. With only a handful of individuals with FOP throughout India, a national advocacy group didn’t exist either.

After connecting with the IFOPA, Sunil was impressed by the dedication of Founder Jeannie Peeper and the entire team in supporting patients and their families. Inspired, he started connecting FOP families in India in 2021 and officially founded FOP Trust in 2022.

Since starting his own FOP organization, Sunil has been a tireless advocate for families throughout India and the whole world. In 2022, he hosted the first Family Gathering in India alongside Dr. Vrisha Madhuri, a senior professor of pediatric orthopedics and a member of the International Clinical Council on FOP. Eighteen families attended the first gathering with more participating online. They hosted a second meeting the following year to continue offering community, resources and practical tools. The event is now an annual gathering of families and healthcare professionals in India.

Sunil has also developed a network of doctors and dentists in India for individuals with FOP and hired a social worker who travels across India to directly support patients in their homes. He has helped raise awareness of medical and adaptive tools in addition to sourcing income-generating tasks to increase independence and quality of life for individuals with FOP.

Since first connecting with the IFOPA, Sunil has been an invaluable member and leader in the international community. He serves on the IFOPA’s International Presidents’ Council (IPC), a network of volunteers who are committed to helping their national and regional FOP communities stay connected and informed about treatments and research.

Since receiving his daughter’s diagnosis, Sunil has reduced his travel in his field of road and construction safety products to spend more time with her. He is committed to “making the FOP world smaller by bringing families together” in pursuit of a cure.

In honor of Sunil’s leadership and pioneering spirit, we are proud to award him with the Jeannie Peeper Award for Outstanding International Leadership.

“I am humbled at the recognition,” Sunil said. “This award belongs to each and every family who has been proactive. I am sure this will go a long way in our efforts of finding more patients and making India prominent in the world map of FOP.”

Thank you, Sunil, for bringing families together and selflessly spending your time and resources to make the world brighter for everyone impacted by FOP!

Inspiring Leader: Erin Danzer

Growing up, Erin Danzer shied away from talking about her FOP diagnosis. She was diagnosed at 10 months old and didn’t experience many physical symptoms of her disease for most of her childhood. If people couldn’t see FOP, she didn’t want to experience the discomfort of sharing her story or asking for help.

Once her FOP progressed in her late teens and early twenties, she slowly started sharing about her life with FOP — in person and online through social media. As she opened up, she realized by sharing her unique experience, she could find common ground and even encourage others in the FOP community.

“Now I’ve found my voice,” Erin said. “Growing up, I feel like I didn’t really know what to advocate for. Am I advocating for myself or the community? And now I’ve found that I can do both.”

For years, Erin has been an active participant in the FOP community, lending her voice and story to a number of events. She was the star of the Erin’s Day Fundraiser when her parents started it when she was 11. As an adult, she shared her story for the IFOPA’s 2021 In Pursuit of a Cure campaign, spoke at the 2022 Finding a Cure Gala, made FOP Awareness Day bracelets this year, and participated in an IFOPA panel on the value of assistance dogs. She also regularly posts on social media and on her blog to help people understand the reality of daily life with FOP.

This year for Rare Disease Day, Erin had the special opportunity to take her advocacy offline and visit Capitol Hill to speak with representatives about the experience of living with FOP. Through the EveryLife Foundation’s Young Adult Rare Representative (YARR), a rare disease advocacy group for young adults, she learned how to practice legislative advocacy and use her passion for storytelling to amplify not only her own voice but the voice of the entire FOP, rare disease and disability communities.

“There is hope for the future of FOP,” she said, reflecting on her trip. “We are actually making progress, and it’s really exciting.”

Erin’s advice on advocacy and using storytelling to make a difference has been invaluable for so many in our community. To honor her ongoing efforts to raise awareness, we are proud to present Erin with the Jeannie Peeper Inspiring Leader Award.

In college, Erin has been studying adaptive fashion. This academic year, she’ll finish her fashion design program and graduate with her associate’s degree before transferring to Cal State San Marcos to pursue a bachelor’s in communication. Her dream is to work for a nonprofit focused on rare diseases or disability.

Thank you, Erin, for bravely sharing your story and fighting for everyone impacted by FOP! We look forward to all the incredible work you will continue to do that empowers individuals and communities!

Emerging Leader: Oliver Bedford-Gay

Oliver Bedford-Gay was diagnosed with FOP at 13 months old and has been attending fundraisers for FOP Friends since he was three.

He gave his first speech about FOP at the age of 10 and received a standing ovation after bringing the audience to tears. Since then, he hasn’t stopped advocating for himself and others who are impacted by the rare condition they share. Over the years, Oliver has had the privilege of meeting many people living with FOP, both in the UK and USA, and considers many of them friends.

Oliver has given TV interviews; been featured in newspaper articles; given a presentation for Rare Disease Awareness Day at the prestigious Hunterian Museum in London; spoken at school assemblies, to local Scout groups, and at pharmaceutical events (both in person and virtual); attended a debate at the House of Commons in London; and visited 10 Downing Street to present a petition to the UK government to demand dedicated funding for FOP research.

Oliver is also an active member of FOP Friends, the only organization in the UK dedicated to supporting people living with FOP, and has attended numerous fundraising events and conferences, helping both behind the scenes and in front of house.

A dedicated member of his local Scout group, Oliver has achieved his Gold Scouts Award. He’s currently working toward his Platinum Scout Award and is enrolled in the Scouts’ Young Leader program where he is learning to become a Scout leader in time.

Oliver is currently working on his Silver Duke of Edinburgh Award, completing volunteering tasks and taking part in a canoeing expedition. Oliver is planning to start his Gold Award this autumn as soon as he achieves his Silver Award.

“I won’t let FOP stand in my way and, with the help of my leaders, I am determined to find a way to make it work, just like I have done with everything else in the past,” Oliver said. “Hopefully, if and when I am successful, I’ll get to go to Buckingham Palace!”

Oliver has had a passion for trains since he was little and is now an enthusiastic member of the local Model Train Engine Society. He has his own model train and volunteers his time with the club on Sundays to take young children on rides around the track. As part of his volunteering, he also helps with tasks around the park to maintain it for the benefit of all. In April, Oliver was presented with the Ken Hodson Award for his contribution to the club and his perseverance and commitment despite his health challenges.

Oliver has recently graduated from high school, passing his GCSEs (General Certificate of Secondary Education) with flying colors. He has now enrolled in a two-year college course to study aviation operations and travel, with hopes of becoming an airline pilot one day.

“I have so many interests and hobbies and so much I want to achieve,” Oliver said. “We need to find a treatment for FOP that will allow me to follow these dreams, but not only for me. I want all the people I have met in the UK, the USA and beyond to be able to follow their dreams too.”

In recognition of Oliver’s dedication to spreading awareness of FOP, we are proud to present him with the Jeannie Peeper Emerging Leader Award.

“I was genuinely surprised to receive this award,” he said. “I have never expected any kind of award. I just try and do my part. If we can all do a little bit, all work together, then we will succeed in our fight to find a treatment for FOP. I am proud to be a part of this strong community where we all want the same thing.”

Oliver, we are inspired by your enthusiasm for life and perseverance to pursue your passions. Thank you for everything you have done for the FOP community! We are excited to watch you continue to grow as a leader and raise up the next generation of advocates!

Attending school can be nerve-racking for children and parents! The IFOPA has many resources to help you and your child confidently ease back into the classroom. 

The IFOPA has Grade/Age-Specific Tips for Navigating FOP and School. Additionally, Family Services Coordinator Melissa Davis is available via phone, text, Whats App, social media messenger, and Zoom to help you with specific needs, requests, and questions. Reach out to schedule a time to meet with her - [email protected] or + 1 (605) 877-5289.

Classroom Resources 

Letters to teachers, school staff, and sports coaches can be helpful to get everyone on the same page and organize information. The IFOPA has created templates that can be copied to a new document and edited with your child's specific needs and information. 

Sample School Information Book

Sample Sports Information Letter

Nervous about how your child’s classmates will receive your child? Many FOP parents give a classroom talk at the beginning of the year. The IFOPA has also created a video that can be shown. 

Examples of Classroom Talks

The Same But Different: Life with FOP Classroom Video

The Ability Toolbox: Everyday Tools for Independent Living 

The Ability Toolbox showcases adaptive equipment that can help make everyday life with FOP easier. It also includes many items which can help during the school day. There are various adaptive clothing ideas, dressing aids, adaptive silverware to improve independence at lunchtime, and a whole section dedicated to school and childhood. 

Supporting a Child with FOP: A Practical Guide to Their Learning Journey, by FOP Friends 

This book is an essential and informative guide for anyone supporting a child with FOP. It details FOP in a reader-friendly manner, while providing invaluable advice.

The Portuguese version of the guide was also written by FOP Friends. Helen Bedford-Gay worked with Kryscia Napoli, mother of Vitor, who lives with FOP, and Dr. Patricia Delai to review and update the guide for 2024. It also contains specific advice and guidance for children and young people in Brazil.

Safety at School 

Keeping your child safe at school can feel overwhelming. Sharing a personalized medical form with your school nurse, administration, and teacher can provide peace of mind while making sure everyone is on the same page. Similarly, the FOP Treatment Guidelines written by the International Clinical Council on FOP should be shared with your child's IEP team and any physical, occupational, or speech therapist. 

Personalized Emergency Medical Form (available in 5 languages)

FOP Treatment Guidelines

Email to Principal and Teacher 

Emailing your child’s principal and teacher before the first day of school is a great way to break the ice and share resources with them. Here is an example email script:

Hi (Insert Name Here) 

I am reaching out regarding (Insert student name here) who will be a (insert grade and school here) this year. (Insert name here) has a rare genetic condition called Fibrodysplasia Ossificans Progressiva or FOP for short. They are truly one in a million, as there are less than 1,000 confirmed cases worldwide. In short, FOP causes a person's muscle and tissue to turn into extra bone in their bodies. This blocks their joints, limits their mobility, and eventually results in near-complete immobility. FOP can be accelerated through trauma such as a fall on the playground or a virus. There is currently no cure for FOP. (INSERT SPECIFIC INFORMATION ABOUT STUDENTS PHYSICAL ABILITIES HERE.) Many children with FOP have support in the classroom ranging from adaptive desks, OT, playground and gym support, an emergency plan with the school nurse, and an aid. The most important part in my mind is staff and student education, as well as continual monitoring and updating of the IEP plan as the condition progresses. I would love to partner with you to help provide any education and support you and the school might need. I have linked a few resources below that you might find helpful. 

What is FOP? – Basic information for you and your staff

FOP Science Made Simple – Good video for your staff

The Same But Different – Cartoon-style video created for children that families often show the class

Emergency Medical Information Form – Personalized form for your school nurse to keep on file

FOP Treatment Guidelines – Medical information for a school nurse or OT/PT