We are pleased to announce the 2021 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 52 other individuals and groups who have been honored with this award since 2010.
The 2021 Jeannie Peeper Awards Committee included Jeannie Peeper, Steve Eichner, Gretty Emmerich, Nadine Großmann, Nancy Sando and Michelle Davis.
Congratulations to the 2021 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.
| The Cali Family | AJ Gonzales and Family | Lydia Scott | Emma Albee |
President's Lifetime Leadership Award: The Cali Family
When Ian Cali was diagnosed with FOP in October 1995, his parents, Amanda and John, began a journey to find hope. Over the years, Ian, as well as his brother, Jason, have also taken active roles in the family’s fundraising success. The Cali’s efforts have had a huge impact on the FOP community and the IFOPA. After more than 26 years, they remain committed to supporting the FOP community and research into the future.
“We started our FOP journey with two fundraising events the winter of Ian’s diagnosis. The first fundraiser held in Ian's honor was a Christmas tree sale hosted by a family friend,” recalled Amanda.
“At the same time, we wrote our first annual appeal, a letter campaign that we continued for 25 years, telling our donors what was accomplished in the previous year and what our hopes of funding were in the year to come. So many friends and family members surprise us by giving gifts every year.”
Even with supportive people in their lives, they felt the challenges and isolation of living with a rare disease. At the time of Ian’s diagnosis, there were only 83 known cases of FOP worldwide, connection to the FOP community was limited to pen pal relationships and there were few research discoveries.
“These challenges propelled us into action, to do what we could to change the landscape in medical research and patient support... Our active approach was born out of a deep-seated hope to find a treatment in time to help our son,” Amanda said.
As the Cali family got involved with the IFOPA, they saw other opportunities to make an impact. They met with Dr. Fred Kaplan and committed to funding grants for the University of Pennsylvania, the only institution doing FOP research in 1995. Continuing a long family history in philanthropy and service, they established The Radiant Hope Foundation in 1997. They began funding efforts that would secure the future of the IFOPA, medical research, clinical support and community-based programs.
Over the years, the family’s determination funded the following efforts at the IFOPA:
- IFOPA staff positions
- Traveling Resource Center Program
- IFOPA organizational/strategic planning meetings
- Seed funding for the Quality of L.I.F.E. (Living Independent with Full Equality) Award Program (now known as the The Harold and Elaine Kaplan Quality of L.I.F.E. Award Program)
- 4 international FOP symposiums
- Multiple FOP family meetings in the United States, Argentina and Brazil
- Strategies for a Treatment of FOP Scientific Workshop
- 1st FOP Drug Development Forum
- Seed funding for the FOP Registry
- Ability Toolbox — Everyday Tools for Independent Living Program
- Gene therapy research
They have also provided funding for programs outside of the IFOPA including:
- A lifetime research position named The Cali and Weldon Professor of Research in FOP at the University of Pennsylvania
- Over 60 collaborative research grants at UPenn and other universities
- Clinical support positions at UPenn and the Mayo Clinic
- 4 FOP mothers retreats
- The International Clinical Council on FOP (ICC)
- The Tin Soldiers documentary and the Tin Soldiers Global Patient Search
“Initially, it was easy to be selfish about fundraising, to just focus on the potential positive impact for my loved one. For me, that's where it started. Sell some cookies, do some garage sales — and PRESTO! — Ian gets a cure,” said Jason.
“As time went on and our fundraising and the FOP world grew, so did our motivations. We met incredible people throughout the FOP community and the world through our work, and those relationships became another motivator… We know we can have an impact on the lives of people we love and who inspire us.”
“This award feels like an acknowledgment of the many hours that turned into years of events, personal asks for money, thousands of thank you notes, working hard and staying focused, that we have collectively done,” Amanda stated.
“It means a great deal to us to have been chosen by Jeannie herself to receive this award. She has been our guiding star for 26 years and remains a mentor to each of us today. She stands as a pillar in our family, a person we can count on and who always believes in the bold ideas that seem to come into focus for us as a family on how to push the world closer to a treatment for FOP.”
The Cali family is quick to point out that each step, each action, each cent is important. “It all starts with a dollar. Never did we think 26 years ago that we, along with devoted families, friends, business associates, other foundations, and even strangers would have collectively funded over $15 million of support for the IFOPA, medical research, and many other initiatives focused on FOP,” said Amanda.
“Fundraising is a way of turning grief and hope into an actionable form of coping and making a difference in people's lives.” Amanda says with conviction, “Find your area of FOP work that sparks passion or that you can feel hopeful about and match it with any talents you have… Whether you fund the IFOPA, your national organization or other FOP-related projects. We consider the FOP community a large family — and together we will build the best outcome for us all.”
Having learned from Jeannie herself, the Cali family firmly believes everyone in the FOP community can play a significant role in helping to find a treatment. Taking action to change your destiny is a rewarding experience!
Here are just a few ways that we can all make an impact:
- Fundraising for the IFOPA and other FOP-related programs
- Speaking in public or at FOP meetings
- Helping to search for those in our community that are not yet diagnosed
- Posting awareness messages on your social media
- Participating in the FOP Registry and various surveys
- Supporting your local International President’s Council (IPC) representative
- Supporting your local FOP organization
- Sharing your experiences and voice to bring education to others
Outstanding Community Involvement Award: AJ Gonzales and Family
When AJ Gonzales was diagnosed with FOP at two years old, his family was determined to rally around him. One month after his diagnosis, the Gonzales family attended their first FOP community event. They realized the FOP community was something they needed and that more families like them could use the same help.
“Our family wanted to show support to the community. Their warm welcome to us when we were first diagnosed helped us to jump right in and we wanted to make a difference,” recalled Kristi Gonzales, AJ’s mom.
The Gonzales family has held fundraisers that inspired incredible support from their local community and been involved with the IFOPA Family Gathering. In 2018 and 2019, siblings Lexi and Lillie worked with Kristi and the IFOPA’s Family Services Manager Hope Newport to lead planning for the Family Gathering’s Fun Zone. Lexi planned the Fun Zone activities during the 2020 Virtual Family Gathering. Rico Gonzales, AJ’s dad, was the DJ for the 2018 Family Gathering, and Kristi has been a speaker for several years. AJ, now age 10, has been part of the family’s activities too. In 2019, AJ declared he wanted to host a lemonade stand for his birthday so he could “raise money to pay for research that would help his FOP friends get medicines.” AJ has also been a great spokesperson for the community. He and Kristi spoke at the FDA Rare Disease Listening Session on FOP in 2019 and filmed a video for the IFOPA’s inaugural In Pursuit of a Cure Campaign in 2020.
The desire to support other families and the IFOPA led Kristi to serve on committees, help with the Ability Toolbox – Everyday Tools for Independent Living Program, and serve as an FOP Connect Peer Mentor. She’s served on the Board of Directors where she’s been Vice Chair and currently serves as Chair. Since they live across the bridge in New Jersey, Kristi often meets with families who are visiting doctors at the University of Pennsylvania, many of whom are newly diagnosed with FOP.
With each role, the family has valued the resources and relationships they’ve found and become even more committed to increasing what the IFOPA can do.
“The IFOPA is so important to me because I have learned firsthand of the hard work that goes on behind the scenes – how dedicated all of the families are, the staff, the doctors and especially the FOP patients. At the end of the day, we all want the same thing,” stated Kristi.
“I truly feel we were inspired by how amazing and helpful our community is. Our family wanted to make a greater impact and we found projects to take on that were important to us and the community.”
Kristi loves being part of the team of leaders and volunteers who are making decisions that are meaningful to everyone living with FOP. She and the entire family are honored to be receiving an award for all they do, and they plan to keep finding ways to fund research and support the resilience of the FOP community.
“Jeannie's vision was a strong community to carry on a legacy and that’s always been our goal to continue that support,” Kristi said.
“Our hope for the future is for the community to remain strong, to keep having hope and moving forward towards a cure!”
Outstanding International Leadership Award: Lydia Scott
Lydia Scott became involved with the FOP community when her sister-in-law, Brooke, was diagnosed with a variant form of FOP in her twenties. As an internal medicine physician, Lydia felt there had to be a way her medical training could help Brooke and the FOP community. She joined with a small number of families to establish FOP Australia in 2015 and quickly became motivated to do as much as possible.
“Like everyone involved in the global FOP research effort, I see the toll this disease takes with every passing year that goes by without effective treatment,” said Lydia.
“I think once you start to meet more people with FOP and fully realize the importance of stopping this disease, you realize you just have to give it everything you can. Lives depend on this, so anything less is not an option.”
Lydia has served on the FOP Australia Board of Directors since it was founded in 2015, and was Chair 2017-2020. She has coordinated fundraisers and newsletters, compiled clinician updates and helped develop the Support Grant Program. The grants assist people with FOP and their caregivers in Australia and New Zealand with access to equipment and resources.
When FOP Australia launched, Lydia also got involved with the IFOPA. She counts it a privilege to be a part of the Research Committee and Drug Development Forums and to represent the FOP community in Australia, New Zealand and the Asia-Pacific region.
“To me, the IFOPA exemplifies the Rare Disease Day motto, ‘Alone we are rare, together we are strong.’ In relatively smaller populations like Australia and New Zealand, we rely on resources and activities of the IFOPA to help our community as there are some things we’ll never have the scale to achieve alone,” Lydia stated. Under Lydia’s leadership, FOP Australia has become a major financial supporter of the IFOPA’s ACT for FOP drug development grant program and the gene therapy research program launched in 2020.
“The knowledge and power — statistically and politically — to progress towards a cure for FOP is only possible if we work together across the globe … I have learned a great deal about patient-focused care and research from working within the IFOPA.”
Lydia is grateful for the opportunity to contribute to the work of the IFOPA and FOP Australia. Even though the road to finding treatments and a cure is sometimes long or difficult, she’s excited to keep pushing toward making that dream a reality and advocating for everyone living with FOP.
“The IFOPA’s strength comes from the people with FOP around the world. Keeping them at the center of our work, and at the center of the work done by our academic and pharmaceutical industry colleagues, is vital,” Lydia said.
“It involves new challenges as research progresses nearer to effective treatments. In the clinical trial era, engaging and involving countries around the globe is more important than ever for the IFOPA and to achieve further research progress.”
Whatever that means for Lydia in the future, she’ll continue supporting the FOP community in hopes of one day seeing a world without FOP, and she’s moved to be named an award recipient.
“It is an incredible honor to receive this award, especially as it is named after Jeannie Peeper. Jeannie's work, along with others living with FOP, in establishing the IFOPA has set in place a movement that has already changed lives and that undoubtedly will change the trajectory of this disease,” said Lydia.
“Part of the importance of the Jeannie Peeper Awards is that Jeannie has taught us how much difference one person can make. This is a good reminder that if we all keep contributing whatever we can, however we can, we will get there.”
Inspiring Leadership Award: Emma Albee
Emma Albee was diagnosed with FOP at 9 and a half years old, and shortly after, her family discovered the IFOPA and began fundraising. Now in her 30’s and working as a science information specialist at Acadia National Park, Emma is grateful for the connections and support she has had through the IFOPA over many years. She’s committed to making sure more individuals and families have that experience.
“Having FOP can make you feel alone and isolated. The IFOPA works to bring people with FOP together to share resources, stories and research,” said Emma.
“I have truly appreciated and looked forward to the symposiums and gatherings. They were the only times I saw other people with FOP, and I valued those friendships. I was diagnosed before the age of social media, so seeing people in person was even more powerful.”
As Emma grew up, she realized the need for research and information in addition to the relationships that were formed through the IFOPA. Her growing appreciation for all the IFOPA provides led her to do whatever she could to support the organization and the FOP community.
“After the gene discovery, the dream of a cure got a little closer and fundraising was even more important. Then, as there was the first, and then multiple, clinical trials, education became super important,” Emma recalled.
“To have an organization there that you know is getting you the best information straight from the researchers and doctors is so comforting. And having this information is vital to be able to make decisions that are best for you and your family.”
Emma has been a part of fundraisers from dinner parties to using Facebook and supporting the In Pursuit of a Cure campaign. She’s served on committees, as an Ability Toolbox — Everyday Tools for Independent Living Ambassador and speaker at the Family Gathering and Drug Development Forum. She’s on the Family Gathering Success Council, makes cards for monthly donors and is now on the IFOPA Board of Directors.
It means a lot to Emma to be recognized with an award and she’s excited to keep supporting the FOP community and the research developments underway.
“I am honored to receive this award and hope to help the IFOPA continue the great work that Jeannie Peeper started,” said Emma.
“The IFOPA has grown a lot over the last few years as research has made leaps and bounds. I hope the IFOPA can continue to support people with FOP and their families to find treatments and a cure. We still have a lot of work to do, but there are some very talented and dedicated people working for and with the IFOPA to get us where we need to go.”
