We are pleased to announce the 2019 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 38 other individuals and groups who have been honored with this award since 2010.
The Jeannie Peeper Awards Committee led by Steve Eichner includes Jeannie Peeper, Gretty Emmerich, Holly LaPrade, Nancy Sando and Michelle Davis.
Congratulations to the 2019 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 Award: Nancy Sando
Nancy Sando can’t believe how the IFOPA has grown and all it’s accomplishing, but she’s one of the people to thank for the progress of the organization. As a founding member, she has helped pave the way for the IFOPA of today through three decades of serving the FOP community.
“I was diagnosed at age five in 1965. I grew up knowing no one else with FOP until collaborating with Jeannie Peeper in the late 1980s to create a pen pal group of the 11 FOP’ers we knew of. This simple group grew slowly through the early years,” said Nancy. “I continue to be an active participant to make sure our community gets connected with others in a positive manner. I enjoy sharing what I have learned throughout my life's journey to encourage, educate and inspire others.”
Nancy has supported the FOP community through a number of roles with the IFOPA including serving on the Board of Directors and as chair of the Board Development Committee. She believes it’s vital for the IFOPA to connect individuals with FOP and chairs FOP Connect – the IFOPA’s Mentoring Program – to ensure that happens when people need it. She also developed the original FOP Connection newsletter.
“Little did Jeannie or I know that the IFOPA would grow into the amazing organization it is today. As I have served on the Board for several years, I have seen so many milestones we have accomplished – the biggest one being the discovery of the FOP gene,” Nancy said. “The IFOPA is so important because it brings FOP families, physicians, researchers and others together as one.”
After more than 30 years of devoting time and talent to resources for the FOP family, Nancy is still committed to raising awareness and teaching others how to cope and overcome obstacles associated with FOP. She hopes the IFOPA will always be involved in the vital work of supporting the FOP community until treatment and a cure can be found, and she plans to continue doing her part to reach that goal.
“We've come a long way since the ‘pen pal days’ and I am in awe of where we are today. Thanks go to the researchers, pharmaceutical companies, IFOPA Board, IFOPA staff and those FOP’ers who have shared their stories and specimen samples to help us continue striving toward our goal to make FOP a disease of the past,” said Nancy.
Deepest gratitude goes to Nancy for her lifetime of leadership in making life better for everyone with FOP.
“I am blessed to receive this award. I will accept this award on behalf of all our members who have been challenged with FOP,” Nancy said.
Outstanding Community Involvement: Dilyn Martin Family and Friends
Dilyn Martin was diagnosed with FOP at 18 months old and is now entering her teens. Having the FOP community rally around her has meant the world to Dilyn and her family.
Shortly after Dilyn’s diagnosis, her small town of Kotzebue, in the Northernmost part of Alaska, USA came together for a garage sale and barbecue to help raise money for medical expenses. Since 2009 the events have raised money for the IFOPA in a show of support for Dilyn and other FOP patients around the world. Encouraged by the finding of the FOP gene and the promise shown by ongoing research, the village is moved to continue pushing for treatments and a cure for FOP.
“My whole community and the friends and family of Dilyn…they’ve always supported us and our endeavors. They make things happen and are always so happy to do so. The support is overwhelming,” said Jade Hill, Dilyn’s mother.
In 2015, a local company was looking for ways to expand a wellness program and the Midnight Sun Color Run 5K event was born.
“One idea was to host a charity walk. I had always noticed Jade’s annual sale fundraiser for the IFOPA and wanted to supplement her efforts. Also, my daughter, Zaina, was classmates and friends with Dilyn. She always shared what she learned about FOP with us and even did a school project on it in the fourth grade. I knew this was a great way to get my family involved and give back to our community and an organization that was close to our hearts,” said Lucy Mae McConnell, who helps organize the run.
The Midnight Sun Color Run is now a fun part of the community’s life. Businesses and individuals contribute thousands of dollars each year to raise FOP awareness and further research. The town understands the importance of giving Dilyn and her family a sense of belonging. They also appreciate the role of the IFOPA and want to make sure its work can continue.
“Jade often expresses her gratitude for the IFOPA and the FOP community and we, as her hometown, really appreciate it with her…this organization is close to home because it directly helps one of our own people,” said Lucy Mae. “I hope for continued financial support and big breakthroughs for those affected by FOP. I hope for a cure and I hope it is found within Dilyn's lifetime.”
Dilyn has endured misdiagnosis and some loss of movement, and her family struggles to find medical professionals who know what they’re dealing with. They consider the IFOPA the backbone of their information and support network and rely on regular contact with the FOP community to talk about life with FOP.
In the midst of dealing with the challenges that come with FOP, Dilyn’s family and friends are making sure there’s hope, and it’s a pleasure to recognize the outstanding work they do each year.
“Receiving this award is such an honor. It makes me so proud of our community because that is who this award belongs to. It’s the local businesses and community members who show up, volunteer and make the donations to IFOPA,” Lucy Mae said.
“I'd also like to add a thank you to Maija Lukin who helped me to organize the first Color Run. She did all the important work of drafting letters, making fliers, creating a Facebook page and promoting the run. It was because of all she helped with the first year that the following years ran so smoothly.”
“Jeannie Peeper understood the need to come together and do what we could as an FOP family and we absolutely understand that concept,” said Jade. “We live in such a tiny community away in the tiniest part of the world, but we want to do every little bit we can. Getting recognized for that little contribution is so awesome.”
Outstanding International Leadership Award: Helen and Chris Bedford-Gay
No one is ever prepared for their child to be diagnosed with a disease such as FOP. In 2009, the Bedford-Gay family was devastated when they were informed that Oliver, then 13 months old, had FOP. But they refused to let the news keep them down.
“We are not a couple who sits back and does nothing. If there’s a challenge, we face it,” said Chris, Oliver’s father. “Even though we knew this was going to be one hell of a challenge, we decided we would face it head on to change the future for Oliver and all the other FOP patients and families across the world.”
They quickly found the IFOPA and saw the value of being involved with an international organization. When a role on the IFOPA Board of Directors became available, they jumped at the chance and Chris was invited to join the Board.
Chris explains, “It turned out at that initial in-person board meeting, having met Dr. Kaplan and Jeannie Peeper for the first time, that there was a lot we could offer. Immediately, we became involved in the International President's Council (IPC); the FOP Flare-up Survey with the University of Pennsylvania; as well as serving on the Communications and PR committees, to name only a few. This was our first step toward making a difference”.
Chris currently serves as Executive Committee Member-at-Large on the IFOPA Board, and, as Chair of the IPC Steering Committee, he is helping to bring together FOP leaders globally. He’s committed to doing all he can to make misdiagnosis a thing of the past. Chris wants to create a future where FOP is perhaps an inconvenience, not a life-changing and limiting condition. Chris and his family believe wholeheartedly in the IFOPA’s vision, and in seeing that become reality.
“The IFOPA is such an important organization for everyone around the world. It makes the sharing of knowledge, experiences and friendships so much easier for those who are trying to make sense of everything,” said Chris. “With help, the IFOPA will be around for many years to come to help the community navigate this rapidly changing world of FOP—a world that now includes clinical trials and potential treatments, and all the complexities that this hope brings”.
The Bedford-Gay family is grateful they found the IFOPA early in their FOP journey and deeply value the friendship and support of the people they’ve met along the way.
Whilst he was busy supporting the IFOPA’s work, Chris and Helen were also both working on building and bringing together the UK FOP community, which in time led to them setting up the UK’s charity: FOP Friends. Helen says, “At the time we received our diagnosis there was no active support network in the UK and we had to deal with those first few months on our own. We didn’t want families to have to face the diagnosis alone as we had to. Over time, people have come to learn of the charity and we are now contacted (it’s usually the mums!) by people who are distraught after learning of their child’s diagnosis.” Helen supports the families by offering them friendship and guidance, as much or as little as they need: on their terms and in their time. She tries to explain that there is hope after the diagnosis and that they won’t be alone on this journey.
She continues, “There are so many things to consider when you have a child with a complex medical need, and it can be overwhelming dealing with the various agencies and government departments to get the support your child needs and to which they are entitled. We help by signposting patients and families to services that will help to make their life easier, and also advocate for them when things don’t go exactly to plan.”
Helen didn’t stop there though, she recently published the charity’s first book ‘Supporting a child with FOP: a practical guide to their learning journey,’ it was a collaborative project and they couldn’t have done it without the support of their friends around the world. The guide has been distributed to children and their school settings to help them get the most out of school; it has been well-received as a much-needed resource. “Oliver has had many great opportunities through school and his Scouting groups. We wanted to share, support and inspire other families to find solutions that will enable their child with FOP to take part in as many memory-building opportunities in life as safely possible. You only have to look at the older members of the FOP community for inspiration and to see so many excellent role models: a lawyer, a pediatrician, a linguist… to name just a few.”
FOP Friends has also been proud to support the ACT (Accelerating Cures & Treatments) for FOP Grant Program, which helps to support researchers who are looking into finding alternative ways to develop safe therapies for FOP. It is another example of how all the patient organizations around the world are working together in the race to find a treatment for FOP.
“When you are diagnosed with a rare condition like FOP, you don’t expect to use the word ‘lucky,’ except we’re all exceptionally lucky to have found this amazingly strong and supportive community,” continues Chris. “There are so many incredible families around the world who are working tirelessly to support the quest to find a treatment for FOP. To be honored with an award from the inspirational lady who started this journey, when there was no FOP community, means the world to our family. We are thankful that we have been able to make a small difference for people who are on this journey with us. We are accepting this award in memory of Chris’ mum Ann, Oliver’s grandma, who sadly passed away unexpectedly, earlier this month. She was FOP Friends’ longest supporter who has tirelessly fundraised to find a treatment and a cure for her grandson. She will be greatly missed.”
Inspiring Leadership Award: Nadine Großmann
When Nadine Großmann was diagnosed with FOP in 2005, she didn’t know about the IFOPA. She had no connection to anyone else with the disease and never imagined that there would be so much interest in FOP by researchers and pharmaceutical companies or organizations to support patients and families. After nine years and enduring four surgeries, Nadine and her family discovered the website of the IFOPA. A year later, Nadine’s brother met Paul Yu, a scientist at Harvard and Brigham and Women’s Hospital, who exposed him to research happening with FOP. Seeing the research and finding a support network motivated Nadine to get as involved as possible.
“This was a defining moment for us because for the very first time we realized we were not alone. Through the IFOPA community in 2015 – a decade after my initial diagnosis – I met another FOP patient for the first time in my life and finally did not feel like one in two million anymore,” Nadine said. “Meeting all the wonderful and dedicated people of this community was and is a true blessing. It still inspires me day by day to push forward with patient advocacy and move FOP science toward a cure that is available worldwide.”
At her brother’s urging, Nadine participated in the patient panel at the 2017 Drug Development Forum in Sardinia, Italy. She recently started to serve as co-chair of the German FOP association and is currently the representative for Germany on the IFOPA’s International President’s Council (IPC). She never dreamed her desire to contribute would lead to so much so quickly, but she’s dedicated to doing all she can as long as she has the opportunity.
“Being relatively young, I did not expect this at all. It still makes me feel truly honored and, more importantly, is one of the reasons why I felt responsible to even increase my FOP activities through fundraising and committee work,” said Nadine. “Ever since I heard about the IFOPA I was amazed by their work and wanted to give something back. International networking, partnering and exchange of experiences are of utmost importance. Alone we are rare, together we are strong!”
Nadine is a Ph.D. candidate working on FOP. She advocates for preventing misdiagnosis and encourages more people with FOP and their families to participate in research with great hope for the clinical trials being done. As both a scientist and a patient, she also understands the benefit of hearing how others have managed life with FOP. Nadine wants to help the IFOPA to continue increasing the connections between patients, families, doctors and researchers.
“I am really grateful for the fundamental support provided by the IFOPA…I do not know what we would do without them. I am learning so much from them,” Nadine said. “I am so thankful my brother gave me the first push to become part of this fantastic FOP family. I really see this as family…this community is one of a kind and it makes me happy to have been given the chance to be of service. I am determined to do my bit to find a cure.”
Nadine’s efforts are inspiring others and her work to advance FOP awareness, fundraising and research around the world are valued and deserving of recognition.
“There are no words which would appropriately describe how deeply honored I feel that I was selected for this award,” said Nadine. “It feels amazing, especially because this is a community award. I do understand now how much my work for the community is appreciated which motivates me more to work even harder in raising awareness and funds.”
