IFOPA Board of Directors and Officers
We appreciate your partnership in finding a cure for FOP. If you have questions, comments or suggestions for the IFOPA Board, please email [email protected].
Founder and President Emeritus
Retired Board Member
I am an adult with FOP. I graduated from the University of Central Florida in 1985 with a B.A. in Social Work. My incredible journey began when I met Dr. Michael Zasloff at the National Institutes of Health and learned that he had other patients with FOP. Contacting some of those patients gave me the incentive to start the International FOP Association, Inc. in 1988, first as a pen pal group and a means to raise funding for FOP research. I wanted to end the isolation of living with FOP. I met another person with FOP for the first time at age 31 -- what an extraordinary difference that made to my life! The first FOP Connection newsletter was published in January 1989 to connect the 11 founding IFOPA members and today the same publication serves members worldwide. I am now retired from my full-time involvement in the day-to-day activities of the organization and as a board member.
Megan lives in Novato, California and has two children, Elsa and Hayden. Hayden was diagnosed with FOP in 2002 at 2-1/2 years old. Megan held the inaugural Hayden’s Hope Fundraiser for FOP Research in 2003, and has been fundraising on behalf of the IFOPA ever since.
Megan served as Vice Chair of the IFOPA’s Board of Directors in 2006 and rejoined the board in 2018. She is excited to be on the board again and work with the other amazing board members to continue to grow the IFOPA’s efforts to support the FOP community and find a cure for FOP.
Megan went to UC Berkeley and works in the commercial interiors industry in San Francisco.
Megan looks forward to the day when no parent needs to be told the horrifying news that their child has FOP and there is no cure and that no child needs to endure a lifetime with this devastating disease.
Rebecca’s son, Eli, was diagnosed with FOP in 2016 at the age of seven. The IFOPA was an invaluable resource right from the start, so Rebecca and her family wanted to give back. Through their organization, One Rare Boy, they have raised awareness and funds with events such as art auctions, birthday brews, bike rides, and yoga gatherings. Eli’s dad, Kyle, joined the IFOPA Research Committee and Rebecca is a FOP Connect mentor and member of the IFOPA Advocacy and Awareness Committee.
During her 18-year career as a science writer and communications specialist for the US Forest Service, Rebecca has developed the keen ability to present highly technical information in a way that a broad and diverse audience can understand. She brings these skills to the board with the goal of continuing to foster and grow knowledge and relationships within the FOP community.
“The IFOPA can be seen a central point around which our FOP family can gather,” says Rebecca. “I hope to help share the wealth of information available to ensure everyone touched by FOP feels supported and connected on this journey.”
Emma was diagnosed with FOP at the age of 9 in 1998. FOP progressed quickly and she had to use a wheelchair to get around a year after her diagnosis. For the few years after her diagnosis, Emma and her family did a lot of fundraising in the community including dinners, yard sales, and a concert.
Emma went to college and got her degree in Medical Biology. She now works at Acadia National Park in Maine and lives with her family. She enjoys making greeting cards using stamps and watercolors.
Emma believes it is a very exciting time in the FOP community with all of the advances in research. She has attended many IFOPA gatherings and realizes the importance of the family gatherings to bring together the community and to communicate the important information about the current and future research.
Gary’s connection to the IFOPA is through his daughter, Natalie, who was diagnosed with FOP at the age of 10 in 2001. He joined the board of directors in 2012, because he wanted to help find a cure for FOP in any way he could.
Gary has 30 years of experience in finance, 27 of which were spent in the Treasury department of Dow Chemical, where he currently serves as Treasurer. In his previous role, Gary directly oversaw the investment of Dow’s $30 billion in pension and insurance assets.
Gary serves on two other nonprofit boards, as well as several finance and investment committees. “My experience in investing and my knowledge of financial markets enables me to add value to the IFOPA board,” he said.
He believes sponsored research and events such as the Drug Development Forum will help lead to a treatment or cure for FOP as fast as possible. His hope for the FOP community is “to enhance the quality of life for people living with FOP, and give them hope that a cure is on its way.”
Helen Bedford Gay
Helen lives in Sale, England with her husband Chris, and their three children Oliver, Leo and Harry. Chris and Helen have been actively involved in the FOP community since Oliver was diagnosed with FOP at just 13 months old. They set up the UK’s FOP patient organization FOP Friends 12 years ago and have been working to both find a treatment and a cure for FOP, as well as provide support and friendship to those affected by the condition.
Helen is an experienced primary school teacher of 25 years but has take a career break from the job she loves to run the charity. In her role at FOP Friends, she supports those who are newly diagnosed, signposts them to the services they needs, runs the website and social media platforms, delivers projects. advocates for patients, as well as liaising with a range of professionals including medical, research and pharmaceutical representatives. In 2022, Helen was awarded the British Empire Medal in the Queen’s Jubilee Honours List.
Helen has had the privilege of meeting many families and people living with FOP on her family vacations, and she is looking forward to meeting more as she takes up her position on the Board of the IFOPA. She is excited to step up and play a more active role as part of this strong and determined global community to help them achieve their vision: a treatment and a cure for FOP.
Kyle's daughter, Sona, was diagnosed with FOP in 2013 when she was five years old. Since then, Kyle and his family have been involved with the IFOPA and were instrumental in starting the Accelerating Cures & Treatments (ACT) for FOP Grant Program in 2015 after Kyle joined the IFOPA's Research Committee.
A 20-year technology veteran, Kyle has extensive experience in product and technology management for social media, e-commerce, and fintech. He is currently the VP of Product at The Change Co.
Between Kyles technical expertise and past FOP research, he provides an invaluable depth of knowledge. He cherishes the opportunity to work alongside other Board members to help guide the organization in its efforts to discover new and promising breakthroughs.
"I hope that soon, we find treatments that offer meaningful improvements in the lives of our loved ones with FOP and that we support each other along the way."
Chrissy is known as “Aunt Chrissy” to Joshua Scoble who was diagnosed with FOP at three months old. A people person and organizer, Chrissy found it was a natural fit to assist in coordinating support efforts after Joshua’s diagnosis when many people were eager to help but didn’t know what to do.
Chrissy is director of concessions for a county agricultural society and fairgrounds which has one of the largest fairs in the state of Pennsylvania. She also has 10 years of experience working in customer data services.
She is currently the President of Joshua’s Future of Promises, a nonprofit organization she set up in 2008 to help with fundraising for FOP research. Joshua’s FOP now has more than 100 volunteers and has raised over $1 million.
Chrissy wants to help raise awareness and funds while ensuring proper plans are put into place to keep the IFOPA moving toward the end goal of finding a cure for FOP.
“I want everyone to know every penny helps and every donation gets us all closer to that goal. I know we’re making a difference and someday will find a cure!”
Nadine Großmann was correctly diagnosed with FOP at the age of 15 in 2007, but it took seven more years until she learned about the IFOPA and other national organizations, such as FOPeV based in Germany.
After enrolling in the Master’s Program “Molecular Medicine” and writing her thesis about an FOP-related topic, she attended the IFOPA's Drug Development Forum in 2017 and shared her story for the very first time on the patient panel. Subsequently, she became more and more involved in volunteer work for the IFOPA, became the Vice Chair of the German FOP organization board and the International President's Council representative for Germany in 2018. In 2019 she continued her scientific career in the FOP field as a doctoral candidate. As of today, she is serving on several committees at the IFOPA.
She is determined and dedicated to doing her part to help find a cure for FOP and to raise as much awareness and funds as possible to educate people and to identify the yet undiagnosed. She has done a few fundraising events and has given a number of interviews for national and international magazines and newspapers and was also filmed twice by German TV stations.
Nadine is excited to contribute her expertise as both, a patient with FOP and an FOP researcher (a unique combination) to the Board of Directors.
Kerry initially learned of FOP through one of his wife's good friends, Rory Otto, whose daughter, Sienna, was diagnosed in 2012. Kerry and Claudia have been donors to the IFOPA since learning about the disease through Sienna’s diagnosis.
He began his 20+ year career on Wall Street at Donaldson, Lufkin & Jenrette (which was acquired by Credit Suisse) as an equity analyst covering mid-cap regional banks, thrifts, the GSEs and other financial services companies. After leaving Credit Suisse, he worked at several of the largest multi-strategy hedge funds (including Balyasny Asset Management, Parameter Capital Management and Citadel) with a primary focus on long/short equity within the financial services space. His responsibilities included performing detailed industry analysis as well as fundamental research on 50+ publicly traded companies to generate investment ideas for an investment portfolio that exceeded $1 billion.
He intends to bring his investment experience to the IFOPA to enhance and sustain the financial flexibility to fund FOP research and family support services.
“I’m looking forward to serving on the IFOPA board because of the critical resources the organization provides for the FOP community,” Kerry said. “The compassionate support, awareness, education and funding, coupled with dedicated research to ultimately find a cure for FOP is inspiring.”
Kerry lives with his wife, Claudia, and two daughters in Irvington, NY. He has a BBA from the Isenberg School of Management at the University of Massachusetts at Amherst.
Hollie is the Vice President of Scientific Operations at Accelerated Cure Project, a patient advocacy organization for multiple sclerosis. In her 19 years there, she has helped establish and run ACP's MS Repository of blood samples and data, as well as iConquerMS, a patient-powered research network for MS that performs and supports patient-centered research in MS. She also leads the organization's efforts on diversity and inclusion in MS research.
“Sharing insights across organizations and therapeutic areas can be incredibly beneficial all around,” Hollie shared. “I pledge to do all I can to leverage what I’ve learned in my MS work to benefit the FOP community."
Hollie lives in the Boston area and serves on the institutional review board of Beth Israel Deaconess Medical Center. She is also active in leadership efforts at her alma mater and her church.
Hollie is excited by the progress made in medical research over the past two decades and the potential for future breakthroughs in FOP. She looks forward to contributing her expertise in research-focused advocacy to help the IFOPA achieve its mission of curing FOP.
January 2020 - December 2021
January 2018 - December 2019
January 2016 - December 2017
January 2014 - December 2015
January 2012 - December 2013
January 2011 - December 2011
January 2009 - December 2010
January 2007 - December 2008
June 2005 - December 2006
*Prior to June 2005, the IFOPA was run by Jeannie Peeper, President & Founder