Posted July 17, 2018
We are pleased to announce the 2018 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, Jasmin Floyd, Nancy Sando and Michelle Davis. The committee thanks all of those that made nominations.
Congratulations to the 2018 winners whose gifts of time, talent, experience and selflessness have made an incredible impact on the FOP community. Learn more about them through the stories below.
President's Lifetime Leadership Award
FOP Members Around the World
In honor of the IFOPA’s 30th Anniversary, I am proud to present the IFOPA President’s Lifetime Leadership Award in recognition of each person who has faced life with FOP.
Through my own journey with FOP, I have been honored to meet and befriend many others with FOP. Through those connections, I have been witness to the courage, strength and perseverance of our community. There is no doubt in my mind that all of us living with FOP represent the essence of the Lifetime Leadership Award.
Our FOP family is as unique as the individuals within it.
From infants born with “funny looking toes,”
to school age children learning to navigate a world with ever-changing physical limitations.
From college grads committed to competitive career fields despite FOP’s adversity,
to experienced FOP mentors who are always an email or phone call away.
From those who give the gift of themselves through participation in clinical studies and trials,
to those we have lost along the way that have given the everlasting gift of tissue donation.
We, as individuals with FOP, are who inspire others to understand FOP.
It is our voice that transcends.
It is us, the FOP warriors, who lead the charge for treatments and a cure.
What began by 11 people with FOP, as an organization created to support each other and share information, is now the entity that brings each of us together worldwide. I am proud to be a part of this community, and equally as proud to share in it’s lifetime of achievements.
Everyone has different gifts and attributes. Together, we as individuals living with FOP are united as an incredible force to realize the hope of treatments and a cure, while living the best life possible along the way.
Congratulations to us, the FOP community, on the achievements of today, and the milestones of tomorrow. My personal admiration to each of you for staying strong through the tough times and for continuing to lead and achieve so much for your community. It is an honor and a privilege to share this journey with you.
With much love and gratitude,
Jeannie L. Peeper
Founder & President Emeritus
International FOP Association
Outstanding Community Involvement Award
Individual: Gary McGuire
While Gary McGuire talks about his involvement with the IFOPA as “simply seamless,” with his skill set, this father has really shown remarkable efforts to get his community and workplace involved to raise money for the FOP community.
“I wanted to be a part of the IFOPA because it is very unsettling when you find out your child has a diagnosis of a rare disease. When I got involved, I was able to keep up on all the new information available for people with FOP,” he said.
Gary’s profession as a finance executive gave him experience in investments and overseeing pension plans. A lot of his acquaintances have set aside a certain amount to give each year and oftentimes the amount is very large. Gary made the point that it is much easier to ask people who already plan to make a certain size charitable donation to direct a part of it to the IFOPA, than it is to ask someone to give money who was not planning on it.
His schedule is busy with business meetings and he sits on multiple boards for nonprofit groups, so his rolodex is full of opportunities for fundraising.
In 2011, when his daughter Natalie was 10-years-old, they discovered she had FOP. That following year, Gary began his letter campaign (it’s actually email with follow-up thank you cards by mail). Now, each year he sends out a letter reminding his contacts what FOP is, updating them on Natalie (going to the University of Michigan this fall!), spreading the latest research news, asking them to donate, and then explaining how their donations will be used.
Donating is made easy by giving different options, such as the employee matching program at his company, through the United Way, or by going directly to the IFOPA’s online dedicated fundraising page for Natalie.
“The letter goes to a little over 1,000 people and then 60-100 make donations. I probably only really know 1/3 of the people on the list personally, but something about Natalie’s story reaches them,” Gary explained.
Gary is very flattered to be recognized for his fundraising efforts, and he commends the people who surround him for their philanthropic hearts. One amazing anonymous donor has made contributions so astounding that Gary’s letter campaign has now raised nearly two million dollars in funding for the IFOPA.
After the donations are made, Gary prints a photo card with a collage of family pictures on the front, and a personal thank you note from him and Natalie on the back.
For Gary, he believes in the work he does because he views the IFOPA as the greatest resource for accelerating the research to find a cure and supplying information to FOP’ers and their families.
“Once we got to Dr. Kaplan, we felt some level of comfort and relief. With the IFOPA, I’m at the source where very smart people are doing everything they can on your behalf,” he said.
Natalie has inherited the same go-getter attitude as her dad, and was celebrated this year as an Outstanding Student in Michigan. She was recognized at a special ceremony in Detroit, then once again received special recognition at an honors ceremony at her high school.
“I give most of the credit to Natalie for what I achieve in fundraising. She’s a trooper, she has an accelerated class load and she graduated with four years of straight A’s. It has been easy to be positive when she’s so positive,” he beamed.
Thank you, Gary, for the extraordinary work you have done within your position on the IFOPA board, and especially the phenomenal amount you have raised by simply reaching out to your circle of family, friends, co-workers, and professional acquaintances.
Outstanding Community Involvement Award
Community is something that means quite a lot to Amy Gordon and her family. Since 2012, husband Jacob, daughter Arlie, son Zip, and many more family and community members gear up to raise money to benefit the work of the IFOPA.
“When Zip was diagnosed with FOP, we were diagnosed as fundraisers at the exact same time,” Amy said. “There was no way I could not get involved, and I knew I had support from my family and community.”
When they found out Zip had FOP, Dr. Kaplan was there for the family instantly and the IFOPA quickly became a vital part of the Gordon’s lives. “Different people have different needs for support. For some it might be meeting with the doctors and researchers, or receiving up-to-date information on treatments. For me, it is connecting with the FOP family of people. The IFOPA is near and dear to my heart for offering support in so many different areas.”
Amy found inspiration from a mentor she met through the IFOPA who held a black tie gala in California. Since the Gordons knew their experience with galas was limited, Amy realized this wasn’t the type of event they would feel comfortable planning. The Gordons thought about what they knew best and they landed on BBQ and beer.
ZipperQ has turned into a must-attend event for over 4,000 people annually on the first weekend of October. Back in 2012, the generally mild Midwest fall turned into a drab weekend of sleet and cold temperatures. Their 22 BBQ competitor teams fought through the weather the entire weekend to keep their smokers going.
“Zip needed a nap close to event time and when I got back from the house, I was stunned. Cars were all over the place, 1,500 people came even though it was miserable. Everyone just wanted to be a part of something good,” Amy reflected.
With two full-time jobs, planning an event that has raised over $750,000 for the IFOPA to date, and serving as the IFOPA’s board chair, there is no question that Amy and her team deserve Jeannie Peeper’s Outstanding Community Involvement Award – Group.
“It is heartwarming to receive this award from the IFOPA. I’m very excited we, and so many people have helped along the way, are being recognized for our accomplishments,” Amy said.
Sometimes the Gordons don’t even know some of the people who devote countless hours to making their event a success.
For Arlie and Zip, their favorite aspect of ZipperQ is seeing all their friends. Zip also enjoys “being famous for a day.” For Amy, it is hands down the pride in her community.
“The pride is overwhelming when you pull in on event day and see all the people. It is like your wedding and graduation rolled in to one. Everyone is giving back and doing their part, it is so humbling.” She concludes.
The IFOPA commends the Gordons, their extended family and community on pulling together to benefit the IFOPA in such a big way. They put forth a lot of hard work, while having a lot of fun.
Outstanding International Leadership Award
In 2007, Malcolm Munro was told that his two-year old granddaughter Miranda had FOP. “When you have a child or grandchild diagnosed with a rare disease, after you recover from the initial shock you think about how you can help,” he explained.
With a PhD in business administration from the University of Minnesota and lengthy teaching and college administration experience, Malcolm was a welcome addition to the IFOPA Board in 2009. To begin his service, Malcolm was appointed Vice Chairperson of the Board, and Chair of the International President’s Council; in 2011 he was elected as Board Chair, and later served as Board Secretary until he retired from the Board in 2013.
His many accomplishments include proposing and establishing the Jeannie Peeper Awards to recognize outstanding volunteer service, and to acknowledge Jeannie's vision and leadership as founder and long-time President of the IFOPA. Malcolm strengthened and grew the International President's Council by more than doubling the number of member countries. He created a 30-page Director's Guide to enable IFOPA Board members to better understand their role and responsibilities. Other accomplishments include creating IFOPA's Wikipedia page, chairing a committee to revise IFOPA's mission and vision statement, and drafting the Code of Conduct for board members.
Malcolm's contributions to the global FOP community and the IFOPA are outstanding. When Malcolm began providing his insights on administration to the IFOPA, it was an emerging organization but one with great capacity for growth. By raising IFOPA's professionalism, he helped to enable that growth and brought a new level of maturity to the organization. We congratulate him on this well-deserved honor of the Outstanding International Leadership award.
Malcolm encourages everyone in the FOP community, and particularly those outside the USA, to think seriously about serving on the Board or a committee as a way of supporting the FOP cause. “No one should be intimidated by the idea of serving on the Board. The IFOPA Board and its committees are very welcoming, and they have an active interest in hearing new ideas. If you are invited to serve, respond positively because it means the Board believes you have skills and knowledge that will help the IFOPA in achieving its goals.”
“It is very gratifying to know there are people out there, and particularly our founder Jeannie Peeper, who favorably regard the activities I was involved in and appreciate my contributions.” Malcolm says.
Inspiring Leadership Award
Holly LaPrade is a 37-year-old woman living with FOP and was diagnosed with the ultra-rare genetic bone condition at the age of 16. Although at first she was reluctant to share her personal story in a public forum, Holly has now embraced it as being her life’s purpose.
“The reason I have FOP is so that I can utilize my personal experience in order to make a positive difference in the lives of those with FOP and their families,” she says.
Since her diagnosis in 1997, Holly has served in various volunteer capacities for the IFOPA, including six years of service on the Board of Directors. She has also served as Secretary of the Board, Chair of the Publications Committee and Assistant Chair of the Family Workshops for the Third FOP Symposium.
Holly also served on the planning committee for the IFOPA’s first-ever teen and young adult meeting in San Diego, California. During both meetings Holly led several workshops including a teen session and an adaptive hair & makeup workshop.
Holly is an outspoken advocate for FOP and is dedicated to increasing public awareness and raising funds in order to further medical research. She has been featured in numerous media pieces including an Inside Edition segment and an internationally broadcast documentary produced by National Geographic.
Holly has also served as a guest speaker at a number of venues; including the University of Pennsylvania and Quinnipiac University medical schools, Regeneron Pharmaceuticals, the Connecticut State Capitol and Capitol Hill in Washington D.C.
In 2016, Holly developed an idea to approach her local Senator and request that the State of Connecticut pass legislation which would enact an annual awareness day for FOP. The bill was approved by the General Assembly and in 2017 Connecticut became the first state to declare a day dedicated to raising public awareness for FOP.
Holly and her family have been active in fundraising efforts in order to fund FOP research since 1998. Their most recent event was The Physical Freedom Festival, held in September 2016.
Holly holds a degree in Journalism with a minor in Sociology from Quinnipiac University. Upon graduation from college, Holly worked for several years as a newspaper reporter and also as a real estate agent. She is presently employed at Banton Construction Company, where she serves as the firm’s inaugural marketing manager.
Holly will celebrate her sixth wedding anniversary this year, is a proud stepmom and is active in her community in various volunteer capacities. She is currently a freelance writer for Hearst Connecticut Media Group.