We are pleased to announce the 2023 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 60 other individuals and groups who have been honored with this award since 2010.
The 2023 Jeannie Peeper Awards Committee included Jeannie Peeper, Steve Eichner, Gretty Emmerich, Nadine Nadine Großmann, Nancy Sando and Michelle Davis.
Congratulations to the 2023 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: Desireé Peeper
This year, as we celebrate the IFOPA’s 35th Anniversary, my heart is full of pride, love and gratitude for someone very special in my life, my beautiful niece, Desireé Peeper. Like my mom, Desireé has been my rock. I was honored to personally present the Jeannie Peeper Lifetime Achievement Award to her this summer.
Desireé’s interaction with the FOP community started early, at age 2, when she attended the 1994 FOP Family Disney Trip with her family. As she grew up amongst the FOP community, making friends and participating in events along side of me her passion to help others started to blossom.
She began her volunteer role for the IFOPA in elementary school by helping in the IFOPA office doing odd jobs like filing, organizing and preparing the FOP Connection for international mailing. Although it is difficult for me to list all of the many things Desireé has assisted with and participated in, I would like to highlight some of them:
- In 1997, Desireé attended her first Family Gathering at Disney and began making many friends. She was always at ease around others with FOP, as well as FOP doctors and researchers.
- At age 8, at the 3rd International Symposium in Philadelphia, Pennsylvania, Desireé graciously stood on the stage with me and helped me deliver my speech. I was so proud of her courage to stand beside me with a crowd of over 500 onlookers in attendance.
- One of the biggest milestones in the FOP community we shared was when we traveled together with my mom to the University of Pennsylvania for the press release announcement of the FOP Gene Discovery in 2006. That day marked history for FOP and the impact of that moment is etched in our hearts forever. In 2007, at the Fourth International Symposium, Desireé assisted in the children’s program rehearsing and performing alongside children and teens with FOP in a skit representing Drs. Zasloff, Kaplan and Shore in a rendition of “Ain’t No Mountain High Enough.” It was such a fun and heartwarming experience.
- In 2013 and again in 2019, she attended the IFOPA Family Gathering's where she reconnected with many individuals with FOP, their families, as well as the doctors and researchers all of whom she has created a special bond with over the years.
- Desireé has also appeared in FOP awareness programs such as the BBC “Skeleton Key” documentary and the BBC “Incredible Medicine: Dr. Weston Casebook.
- In 2018, Desireé and I were honored to be a part of the Mothers Retreat, seeing old friends and meeting many new moms. It was a wonderful event filled with love, laughter and great joy!
Desireé’s sincere kindness, her understanding of FOP, as well as her compassion and genuine love for the FOP community has helped mold her into the woman she is today. These qualities have also been an integral part in inspiring her career path of becoming a Licensed Social Worker.
I believe Desireé represents that special person in each of our lives that has chosen to take this FOP journey with us, engage in our daily lives, caring for us, loving us, feeling our pain, encouraging us and believing with us that there is HOPE for a treatment and cure for FOP.
It is one of the biggest blessings in my life to know that she will always carry the torch forward in my honor.
Desireé, I am so thankful for you. You are the greatest gift of all. I Love you! - Aunt Jeannie
"Only a life lived for others is a life worthwhile." - Albert Einstein
Outstanding Fundraising Award: The Burgess Family
In 2016, Stephanie and Scott Burgess' son Caleb was diagnosed with an FOP variant mutation.
"We felt helpless and terrified knowing there was no cure, and with it being so rare," they continued, "we knew fundraising would have to be done by those directly impacted."
The family didn’t waste any time, hosting the first annual Bombers for Bones fundraising event the next year.
"Fundraising not only made us feel like we were doing something to help Caleb, but it also gave us hope in humanity," they said. "We immediately experienced tremendous support from family, friends and our community. It felt good to have an answer when people asked, 'what can we do to help?' And the more we raised, the more motivated we became."
Since the inaugural Bombers for Bones event, which includes a homerun derby and baseball skills competition, the Burgess family has raised $166,000 for FOP research.
"Baseball has always been Caleb’s favorite sport and a big part of our family. It just made sense to include that community to help us raise funds for the IFOPA," his parents said.
Once the idea was hatched, the other pieces quickly fell into place. Caleb’s sister Alli thought of the name, while a family friend created a logo of a dinosaur playing baseball to represent Caleb’s organization, the Colorado Raptors. Caleb was thrilled to see it all come together.
"He said the event was like having Christmas and his birthday on the same day," Stephanie and Scott said.
Bombers for Bones was held again in 2018 and 2019. Each year, they saw an increase in sponsors, participants, volunteers and funds raised. Although COVID kept the event from taking place in recent years, the Burgesses have plans for the future, possibly a golf tournament.
But their annual event is just one of the ways the family has contributed to the FOP community and research. Each year, the local high school holds its MAD Week, when students choose a charity to support. In 2018, when Alli was a junior, MAD Week fell during Rare Disease Week so she proposed the IFOPA to her classmates, who selected it. With her Student Government class, Alli organized a week of events to support the IFOPA and honor her brother.
"Caleb was treated like a king," his parents said. "His elementary school and other feeder schools also participated. Many lifelong memories were made."
Today, Caleb is a senior at the same high school. He has helped plan other MAD Week events to support various nonprofits, all while he and his family remain dedicated to the community most dear to them.
"We, like others in the community, are anxious to find a cure; if not for our child, for anyone else who has to live with this terrible disease," Stephanie and Scott said.
Today, they sit on the IFOPA Fundraising committee and continue to find new ways to support research. In recognition of the Burgess family’s contributions, we are thrilled to present them with this year’s Jeannie Peeper Outstanding Fundraising Award.
"The IFOPA is invaluable to the community. The feeling of family and togetherness we get from being part of it makes us feel less alone in our fight. We are constantly in awe of the progress and efforts made," they said. "But none of this would be possible without Jeannie. We are honored for her to choose our family for this award, and we intend to continue to raise awareness and funds until a cure is found."
Outstanding Community Involvement: Zvi Grunwald, MD
Pediatric anesthesiologist Dr. Zvi Grunwald met his first FOP patient in the early 1990’s at the Children’s Hospital of Philadelphia, caring for their anesthesia when they were treated for dental problems. The experience altered the course of his career.
"I was fortunate to meet Dr. Kaplan and learn from him then, and eventually, become his disciple, so to speak, spreading knowledge from our numerous encounters with FOP patients around the world," he said.
As a pediatrician, Grunwald explained, he was interested in understanding how to care for patients with rare diseases. Meeting children with FOP offered an invaluable opportunity to do that. I have been blessed with the unique opportunity to enable very young patients to have surgery and then treat them again as they were growing up, developing personal relationships lasting many years.
As an anesthesiologist, Grunwald challenged himself to use his learnings to find new techniques to make the anesthesia experience more accommodating and safer for patients scheduled for a medical or dental surgical procedure.
"The new measures we’ve implemented have substantially improved outcomes and allowed for outpatient procedures where individuals can leave the hospital on the same day of surgery," he said. "In turn, that allowed us to extend the scope of surgeries we could offer."
For instance, Grunwald, along with his colleagues from different medical specialties including gynecology, intensive care and anesthesiology, have developed clinical guidelines to care for some adult female FOP patients who wish to have families.
"We've been able to support women, usually with milder FOP variants, through conception, pregnancy, labor and delivery of a healthy baby," he said. “These new clinical pathways were disseminated worldwide and now assist patients everywhere.”
In addition to his clinical work, Dr. Grunwald founded the WILL Project, which stands for "We Improve Life and Living of Patients with FOP." Together with volunteer faculty and graduate students from Thomas Jefferson University in Philadelphia, and students and faculty at Shenkar College of Engineering, Art and Design in Israel, Grunwald works with patients to create tools to address their everyday challenges.
"The project," he explained, "has fostered special bonds and enriched lives."
Today, a global expert on FOP and anesthesiology, Dr. Grunwald continues to share what he knows with patients and the medical community. In recognition of his vital work, we are honored to present him with this year’s Jeannie Peeper Outstanding Community Involvement Award.
"I am humbled and excited," he said after learning the news. "I feel this award acknowledges the work of the entire FOP academic and clinical community."
Dr. Grunwald made sure to acknowledge another group’s contributions.
Working with patients with FOP and their families for almost 30 years has been one of the most gratifying experiences I’ve had as a physician, specialist and person,” he said. “What they have given back to me dwarfs my humble contribution, and I am indebted to each individual and the community as a whole. You all have made me a better person.”
Outstanding International Leadership: Clive S. Friedman, BDS (Diplomate AAPD)
Years ago, Dr. Clive Friedman, who is a dentist in Canada’s London, Ontario, was referred an FOP patient. Others soon followed. Since then, he has immersed himself in the FOP community. He’s attended Family Gatherings in the United States, Canada, Argentina, Brazil, South Africa and United Kingdom; helped produce important literature; and presented on FOP and oral health. Friedman explained that his dedication and persistence is largely inspired by those he serves.
"The resilience of this community is like none other I have experienced,” he said. “To be consulted to help facilitate care has been an absolute honor."
Much of Friedman’s involvement with patients is focused on preventative oral health (e.g. more frequent dental visits, avoidance of sugar and the use of special dental tools, pastes and rinses), as well as education for dentists and oral surgeons to avoid harmful dental procedures. To this end, he participates in IFOPA dental health webinars, gives talks at dental clinics, helps the IFOPA prepare patient resource guides, advises on dental surgeries and pre- and post-operative care (free of charge) and recruits FOP community members to apply for the IFOPA Dental Care Travel Stipend.
Friedman’s range of involvement demonstrates his belief that effort and input is required from all parties to deliver safe and effective care and drive research. And he believes the FOP community is well-equipped for this.
"Translational research — between clinicians, researchers and members of the FOP community — is essential to treatment and improving the quality of life for patients," he said. "Having an international community like this one helps in expanding research and knowledge and in preventing harmful outcomes."
Friedman insists that the FOP community’s collaborative spirit has benefited him too.
"I am astounded by the incredible people I have met over the years through my involvement with FOP," he said. "I am deeply grateful to interact with a wide variety of professionals, families and caregivers who enhance my spiritual and intellectual development."
In recognition of Dr. Friedman’s contributions, we are thrilled to present him with this year’s Jeanie Peeper Outstanding International Leadership Award.
"I feel deep gratitude to be honored in this way," he said. "We are all but grains of sand. Whenever those grains come together, in a supportive manner, the world is a better place."
Inspiring Leadership - Paulina Gutierrez
Paulina (Pau) Gutierrez grew up in Mexico. She also has FOP. When she was 18, her condition was misdiagnosed, and she endured five surgeries as a result. Feeling like she still didn’t have the right answer, Pau searched online to see what more she could find. That’s how she learned about FOP.
The language barrier made it a little difficult at first, but as Pau read and translated more information, she suspected she was suffering from the condition and soon came to some difficult realizations.
When I read that there was no cure or treatment, "I felt hopeless, depressed and disappointed," she said. “I didn’t want to know more, but I did decide to follow the IFOPA Facebook page.”
Pau moved to the U.S. in hopes of finding better care, support and a definitive diagnosis, but that all took some time.
"I thought everything would be easier here, but I had to fight to be heard until, finally, one doctor listened to my history and ordered a genetic test," she said. She also gave me information about the IFOPA, but I already knew about it.
Five years after her misdiagnosis, Pau was properly diagnosed with FOP. She attended her first Family Gathering virtually in 2021. Thrilled to connect with other Spanish-speaking patients and their families, she soon hatched a plan.
"After meeting other patients, something in my heart told me it was time to make a change," she said.
"I realized that the IFOPA is important because it makes it easier to meet other patients and," she continued, "because we can learn so much more about FOP, clinical trials and ways to help raise awareness."
But Pau also realized that a lack of Spanish resources was making it difficult for a large group of individuals to find that information and support. So, she set out to change that. First, by starting the Ifopers Latinos Facebook group in February 2022.
"I was so excited to meet more patients like me, as little by little, the group grew. And when I heard members’ responses, I was speechless," she said.
Like Pau, others in the group were thankful to be heard by, and better connected to, the IFOPA despite a language barrier.
One individual told Pau, "When I met Ifopers Latinos members, I felt safe and was grateful to find a group where I could talk about FOP without being ignored."
Pau explained how she feels similar in that way.
"Ifopers Latinos is like my second family. We can be there for each other in our daily lives and support other members through flare-ups and other experiences without judgment," she said.
In addition to staying engaged with and growing the online group, Pau helps the IFOPA translate content, facilitates involvement of Spanish-speaking communities in Latin America, and speaks on the importance of clinical trials, including sharing her own experiences.
The IFOPA is honored to present Pau with this year’s Jeannie Peeper Inspiring Leader award in recognition of her truly trailblazing contributions.
"When I got the call from Jeanie, I was shocked. I couldn’t believe she was calling me to deliver this news,” Pau said. “I feel grateful and honored to receive this award, which I want to dedicate to each member of Ifopers Latinos, who have supported and believed in me. Without them, I wouldn’t be where I am."
Reflecting on all she has achieved alongside her fellow group members, Pau feels like their hard work is paying off. But it’s not complete.
"My hopes are still to find a cure, raise more awareness and connect more people to stop misdiagnoses and help more families," she said.
Emerging Leader - Joshua R Scoble
In March, 16-year-old Joshua Scoble, who has FOP, and his family hosted the15th annual Bingo for a Cure fundraiser benefitting FOP research. Joshua has addressed the crowd of 1,500+ people for many years, sharing about FOP, his journey, and thanking them for their participation.
"The best part of the event is being able to meet all the other FOP’ers and their families,” Joshua said. “Plus, it makes me happy that so many people attend and to see how the numbers have grown over the years."
Although his family’s annual fundraiser has made a significant impact for the FOP community, it’s not the only way Joshua is helping out. In 2019, he spoke at the FDA Rare Disease Listening Session, sharing his personal story about living with FOP with a large crowd of attendees.
"Speaking in front of a lot of people doesn’t affect me much. I wasn’t nervous,” he said. “Instead, it was great to see more people who care."
And as an In Pursuit of a Cure youth ambassador, Joshua has supported other fundraising efforts and the IFOPA as a whole, recognizing the value in our community.
"The IFOPA is important," he explained, "because it helps so many families in different ways, including by trying to find a cure."
We are proud to present Joshua with this year’s Jeannie Peeper Emerging Leader Award in recognition of his commitment to help raise funds and awareness.
"To be honored this way means the world to me," he said.