Meet the Volunteers Making a Big Difference for the IFOPA and the FOP Community
We are pleased to announce the 2020 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 47 other individuals and groups who have been honored with this award since 2010.
The 2020 Jeannie Peeper Awards Committee included Jeannie Peeper, Gretty Emmerich, Nadine Grossmann, Nancy Sando and Michelle Davis.
Congratulations to the 2020 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.
|International Clinical Council on FOP||Stephen Guiseppe||Sienna Otto & Family||Massimo Alfieri||Steve Eichner|
President's Lifetime Achievement Award: International Clinical Council (ICC) on FOP
|Upper row: Robert Diecidue, Clive Friedman, Coen Netelenbos, Rolf Morhart, Christiaan Scott, Edward Hsiao, Elisabeth Marelise Eekhoff, Carmen De Cunto, Richard Keen, Maja DiRocco, Amanda Cali|
|Lower row: Patricia Delai, Robert Pignolo, Frederick Kaplan, Zvi Grunwald, Genevieve Baujat, Mona Al Mukaddam|
|Absent: Matthew Brown, Tae-Joon Cho, Nobuhiko Haga, Michael Zasloff, Keqin Zhang|
The International Clinical Council on FOP (ICC) is a uniquely important authority on patient care, clinical research and clinical trials that was formed in 2017. Comprised of 21 experts in FOP from 14 nations across six continents, it provides critical guidance so people with FOP receive the highest quality care from medical professionals around the world.
“The ICC was established out of need – an emerging need to coordinate and consolidate a voice for the best practices for clinical care and clinical research for people who suffer from FOP,” said ICC Founding Chair Dr. Frederick Kaplan of the University of Pennsylvania.
“The establishment of the ICC has been a personal dream that has been realized during my nearly 40-year journey with FOP. When Mrs. Amanda Cali, mother of Ian Cali, proposed a way forward, the dream became a reality.”
Several major accomplishments have been realized already. “Special Considerations for Clinical Trials in FOP” was published in the British Journal of Pharmacology in 2019 creating a roadmap for investigators and pharmaceutical companies. Also in 2019, the ICC completed a year-long effort to revise the FOP Treatment Guidelines used worldwide. The ICC recently launched a website so their work can be easily found and used by individuals with FOP as well as other researchers and doctors.
“The ICC has worked hard toward giving contemporaneous medical advice on evolving issues, such as the COVID-19 pandemic, and in advising on best practices for clinical trial design and patient safety,” added current ICC Chair Dr. Robert Pignolo of the Mayo Clinic.
“Moving forward, the ICC will continue to tackle these issues and others, such as the identification of undiagnosed patients, and the training of physicians new to the care of FOP.”
A notable strength of the ICC is that its members represent a range of practice areas and specialties. This adds to the council’s credibility and gives it the ability to address a variety of topics.
“That oral health is represented on the ICC is a strong statement that this international body recognizes the importance of oral health as an essential part of overall health,” Dr. Clive Friedman from Canada explained.
“It also reinforces that the body is unique and the importance of total integration of all aspects of mind, body and spirit is what we can strive for.”
For Dr. Patricia Delai from Brasil, being a part of the ICC feels like a validation of her work in dermatology over 20 years and is a great opportunity to connect and share ideas with other respected doctors who see people with FOP. She counts the award a huge honor and believes it speaks to the need for the ICC.
“It means that the FOP community recognizes the value of the ICC and the work that’s being done tirelessly to find answers,” Dr. Delai said.
“It’s a big incentive for all of us to go ahead, united and strong. We don't have enough words to thank the FOP community for this beautiful recognition and trust.”
Dr. Rolf Morhart from Germany began working with FOP patients 30 years ago after seeing a boy who had been misdiagnosed. He agrees that the award shows the ICC can help improve care in invaluable ways.
“For the ICC to receive this award from Jeannie Peeper emphasizes the important role a good working FOP doctor team may play to improve the actual situation of FOP patients worldwide,” Dr. Morhart shared.
The team approach is another reason the ICC provides a vital service to the FOP community. The experts who have come together on the ICC are Drs. Mona Al Mukaddam, Genevieve Baujat, Tae-Joon Cho, Carmen L. De Cunto, Patricia L.R. Delai, Robert J. Diecidue, Maja DiRocco, Elisabeth Marelise W. Eekhoff, Clive S. Friedman, Zvi Grunwald, Nobuhiko Haga, Edward Hsiao, Frederick S. Kaplan, Richard Keen, Rolf Morhart, J. Coen Netelenbos, Robert J. Pignolo, Christiaan Scott, Michael Zasloff and Keqin Zhang. It also includes Amanda Cali and member emeritus Dr. Matthew Brown.
“We are nothing alone, but a lot when you are a group with motivated people,” emphasized Dr. Genviève Baujat from France.
“This is why the recognition of such a group is also a positive message in this world where individuality make more obstacles than advances.”
Ultimately, the ICC gives of themselves to make life better for people with FOP around the world. They are doing extraordinary work to meet the needs of the FOP community.
“Every individual with FOP has taught us what every doctor should know and re-learn every day – that diseases are not just physical processes – but human experiences,” said Dr. Kaplan.
“The ICC has been inspired by this voice and enables the worldwide FOP medical community to give back to patients, families and community – our collective wisdom in the best way we know how.”
Outstanding Community Involvement - Individual: Stephen Guiseppe
Chef Stephen Guiseppe, owner of Cedar Hollow Inn in Malvern, Pennsylvania, has hosted Barnival since 2015 in honor of FOP community member Patrick Doerr. The annual event has raised more than $40,000 to support the IFOPA and the FOP community.
“I met Patrick at the restaurant about 20 years ago. I was working with some of his friends and we all became close, and I've gotten to know his family throughout the years,” said Guiseppe. “We have stayed close, so much that Patrick was the officiant at my wedding almost nine years ago.”
As Guiseppe began brainstorming an outdoor event to hold at his restaurant and bar, the fundraiser idea was born and Barnival quickly gained local support. It includes food, games, live music and a dunk tank, and has become a special community event to raise awareness of FOP. Guiseppe has been blown away by the success of Barnival.
“This event really brings FOP to light for a lot of people who would never have heard of it. That’s the thing I’m most proud of. People ask what it is and how I became a fundraiser for it.
“It’s because of the friendship I have with Patrick and wanting to help him,” Guiseppe said. “He’s such a generous person. He never complains about his situation and just wants to help others. Trying to make him and all the other people with FOP more comfortable and fighting for a cure is why it’s important to me.”
In February 2020, several IFOPA staff and Board members visited the restaurant during a Board meeting in Philadelphia. They were impressed with the dedication of everyone involved with this fundraiser and are proud to see it receive an award.
“Being able to meet Stephen and several of his staff members who help with Barnival made their commitment to and excitement for this event very obvious,” said IFOPA Community Fundraising Manager Cathryn Roys.
“Cedar Hollow Inn exemplifies Outstanding Community Involvement,” Cathryn continued.
Guiseppe is honored by the award and grateful his staff are willing to donate time to make Barnival possible. He wants to keep going and make more of a difference with each year.
“My hope for Patrick and the FOP community is that with more awareness through fundraisers and other people who help, there can be more breakthroughs, hope and help given to people who are suffering with the disease,” said Guiseppe. “The families and friends of people like Patrick are the reason I’m so happy to do my small part.”
Outstanding Community Involvement - Group: Sienna Otto & Family
When Sienna Otto was diagnosed with FOP at age two in 2012, her parents Eric and Rory quickly rallied support for her. Their fundraising efforts with the IFOPA, especially online, have raised more than $527,000.
“We looked into setting up our own foundation, but were thankful to learn the IFOPA existed and was already driving research and supporting families,” said Eric. “The IFOPA provided connection and hope for us at a critical time, and continues to do so. We’re grateful for Jeannie Peeper's vision and for the hard work of so many other families who have gotten us to where we are today.”
The Ottos realized early on they had skills that could benefit the FOP community. Rory and Eric have both served on committees, Eric was a member of the IFOPA Board of Directors 2013-2014 and Rory is currently a Board member. They’re passionate about raising awareness, particularly with medical professionals to help end misdiagnosis, and supporting research. The desire to find treatments and a cure has fueled their fundraising from the beginning.
“We’re both incredibly impatient to have an approved treatment for FOP. We're not scientists and couldn't do the research ourselves, but we felt we could figure out fundraising. We launched our first website within a month of Sienna's diagnosis and raised more than $100,000 the first year,” Rory said. “We have the best friends and family members who were touched by Sienna's story and shared it broadly, helped us set up fundraisers and donated generously.”
Sienna now has a little brother, Alex, and is helping with fundraisers herself. In 2019, she rode virtually in the Million Dollar Bike Ride to raise money for two new FOP research grants. Eric and Rory are honored their family is receiving an award and are most proud to share it with Sienna.
“The progress we see each year is its own reward, but this is incredibly meaningful, especially for Sienna. She has done so much that is out of her comfort zone – participating in medical studies, speaking at events, sharing her story in fundraising materials – and she does it for her friends with FOP more than herself. This award will be displayed prominently in her room,” said Rory.
The Otto Family is committed to doing whatever it takes to someday have treatments available. They’re hopeful for the possibilities as work continues toward finding a cure.
“We’re getting so close and are energized by the progress of teams around the world. It’s exciting that promising treatments are already in the hands of pharmaceutical companies who can progress them from clinical trials to approval and launch,” Eric said. “We can't wait for the day we can come together to celebrate that milestone with our community!” added Rory.
Outstanding International Leadership Award: Massimo Alfieri
Massimo Alfieri has found hope in the FOP community since his daughter, Isabella, was diagnosed in 2009 at age 11.
Alfieri and his wife, Simona, who passed away in 2019, quickly got involved in FOP Italia and the IFOPA. He became vice president of FOP Italia and began serving on the International President’s Council. Simona helped organize family meetings and assisted with the 2017 Drug Development Forum that was held in Italy. They dedicated themselves to supporting people with FOP and the search for treatments and a cure.
“Massimo was immediately available to fundraise for the association, to organize Italian conferences and participate in international meetings,” said FOP Italia President Enrico Cristoforetti.
“He has helped the whole association grow with strong relationship skills. It’s the pillar on which the association and myself support each important and prospective decision at the Italian and international level.”
As Alfieri got more involved, he saw the urgent need to advance research and educate more health care professionals about FOP. He believes the IFOPA plays a critical role in coordinating research, fundraising and support for families worldwide. Alfieri also now serves on the IFOPA’s Research Committee and is happy to give back.
“I was impressed by the IFOPA staff and the comprehensive knowledge of the international FOP community. I also greatly appreciated the many tools to help patients such as treatment guidelines, suggestions for daily life and the tangible tools to promote quality of life,” said Alfieri.
Knowing how FOP will progress motivates Alfieri to do everything he can to help Isabella and the FOP community. He feels happy and honored to receive this award and is touched that all of his work over the past 10 years is recognized.
“This award moved me to tears when I was informed,” Alfieri said.
“In fact, my thoughts went to my beloved wife, Simona, who passed away last year and made important contributions to FOP Italia. I know she’s smiling somewhere. She’ll keep sending us good energy.”
As Alfieri moves forward with Isabella and his other daughter, Eleonora, he’s excited for the possibilities on the horizon because of the strength of the FOP family.
“I hope that the sincere engagement of all the fantastic people in this community remains stable with the same intensity,” said Alfieri.
“Many important results have been achieved and new ones are for sure coming. With such a commitment, I am confident there can't be a different outcome!”
Inspiring Leadership Award: Steve Eichner
Steve Eichner is well-known to many in the FOP community for his seemingly endless desire to help others. Diagnosed with FOP as a toddler, and now 50 years old, he has decades of valuable and practical advice he’s always happy to share with individuals and families.
“I have known Steve for almost two years through his participation in the Family Services Committee. He’s always willing to reach out and share his knowledge, experience and feedback. Steve has been a great resource,” said Hope Newport, IFOPA Family Services Manager.
Eichner steps in wherever he is needed from committees to technology assistance. He recently served as a panelist and breakout facilitator at the 2019 Family Gathering. He also presented a webinar beforehand on visiting Disney for those going to Orlando. Eichner has been involved in online support groups for many years and is the administrator of Support4FOP, an online support group on Facebook.
“Just as FOP is in my DNA, so is my commitment to public service. I have a very long history of giving back to my community, from Boy Scouts to college community service leadership, to museum work, public health and beyond,” said Eichner. “If we all give at least a little back, we end up with a much stronger world.”
Giving back to the IFOPA is particularly important to Eichner because he sees how it meets needs for people with FOP and their families. He also believes it’s critical to support research.
“The IFOPA’s work on research – including financial support for researchers and facilitating information sharing between research teams as well as between researchers and FOP patients – has helped advance research and provide perhaps what FOP’ers need more than anything else: hope for a treatment and a cure,” Eichner said.
Just as Jeannie Peeper made a difference and inspired others, Eichner hopes to do the same and feels honored to receive this award. He wants to continue helping the IFOPA create a better future for everyone in the FOP community.
“I hope we continue to work together to address the challenges of living with FOP, especially in the world of COVID-19,” said Eichner. “I also, of course, hope that working together as an organization and with researchers that we can have successful, accessible treatments and a cure for FOP.”