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 firstname.lastname@example.org.
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.
Amy’s son Zip was diagnosed with FOP at the age of 4 in 2011. She began her board experience in 2015. Amy is married to Jacob, and they also have a 13-year-old daughter, Arlie.
Working as the Operations Manager in her family’s auto dealership, Amy has experience in day-to-day business and personnel management. In 2013 she launched a local community website with her brother to promote business, people, and events in their community.
In 2012, the Gordon family held the first ZipperQ. They have since hosted five successful BBQ events to benefit the IFOPA. The Oklahoma community where they live has donated over $750,000 since the event’s inception.
Amy looks forward to working with the board and the community to implement the strategic plan and bring new services to the FOP community.
Kristi’s son AJ was diagnosed with FOP at two and a half years old. Soon after, they created an organization called AJ’s Avengers to fundraise and raise awareness of FOP. In addition to her IFOPA involvement, Kristie serves on the New Jersey Rare Disease Alliance, the Rare Disease Day organizing committee, participates in Running for Rare, and was a member of the FOP Mother’s Retreat Planning Team.
Kristi lives in Bellmawr, New Jersey with her husband, Rico. Along with AJ age 7, they have two daughters, Alexis, 19, and Lillie, 14.
After eighteen years in law, she took a Senior Executive Administrative position at an Insurance Brokerage Firm. In this role, Kristi facilitates insurance requirements for clinical research trials. She also serves as Co-Director of Special Spaces, an organization that creates dream bedrooms for children with life-threatening illnesses.
Kristi brings a wide breadth of experience and knowledge from working with rare disease organizations, as well as organizational skills and attention to detail to her board position with the IFOPA.
“I believe hope wins,” Kristi says. “Hope for a cure, hope for a medicine and hope for the future. I hope one day I can tell my son it’s okay to run!”
Karen’s daughter Miranda was diagnosed with FOP at age 2 in 2007. Since then, Karen has viewed involvement with the IFOPA as “absolutely vital” for her and her family. She is now in her second term as a board member and secretary of the board, and was also involved in the formation of an FOP organization in Canada, the Canadian FOP Network.
Karen writes a weekly blog about her family’s experience with FOP, as well as other topics of interest to the FOP community.
She graduated with her law degree in 1996, and has worked as a lawyer in plaintiff-side personal injury since being called to the bar.
“My vision for the IFOPA board is for us to continue to appreciate the fundamental importance of scientific research into FOP treatment options,” she says. “Secondly, I believe it’s important that we continue to understand, appreciate and facilitate support between all FOP individuals and families worldwide.”
David’s daughter Miriam was diagnosed with FOP at the age of 12 in 1990. He attended the First International Symposium on FOP in September 1991, where he met many founding members of the IFOPA, as well as Fred Kaplan and Mike Zasloff.
Since then, he has co-authored more than a dozen papers on various aspects of FOP.
David has been on the faculty of the University of California, Davis since 1980. He is currently Distinguished Professor of Biostatistics and Biomedical Engineering. David’s research group works on methods for bioinformatics and data analysis of complex biological data. He also collaborates with many researchers in medicine and biology.
His financial experience includes qualification in four examinations of the Society of Actuaries and serving as treasurer for the Federation of American Societies of Experimental Biology and the Association of Clinical and Translational Statisticians.
“The overriding goal of the IFOPA is to find a cure for FOP, and in the meantime to find therapies that help,” he says. “We want to make the lives of those with FOP easier for themselves and their families.”
Executive Committee Member-at-Large
In 2009 my son recently had neurosurgery for “mysterious lumps on his head.” It wasn’t cancer but they didn’t know what is was, and we had just celebrated his 1st birthday when a call came from the neurosurgeon. The tale of Oliver with his turned-in-toes had made its way to a panel of experts and one had connected the dots. FOP had entered our world and life changed. I soon joined the IFOPA and my role grew to working in multiple committees, building the FOP Flare-up survey with the University of Pennsylvania, and more recently chairing the International President's Council, a role that helps bring together FOP leaders from around the world. In 2012, I founded the UK charity FOP Friends and became chair of the UK’s FOP patient group. My day-job as Chief Technology Office/Products Director of a software company has provided me with skills, experience, and contacts that I use regularly in my FOP community work. I look forward to the day I put-my-feet-up in the evening, remind Oliver to take is medicine and relax while he plays with his two younger brothers, Leo and Harry. That day is not today, so until then, I will do all I can to support the search to find a cure for FOP.
Paul’s granddaughter, Sona, was diagnosed with FOP at the age of five in 2013. He became an interim member of the IFOPA Board in 2014, served as Vice Chair in 2015, and served as Chair in 2016 and 2017.
Paul spent his professional career in higher education, initially as a professor, and later as a researcher and consultant focused on higher education finance. He finished his career as a budget and planning officer at a research university.
He brings to the board many years of experience working with budgets cast within a strategic, goal-oriented framework, while balancing a broad range of stakeholder interests and perspectives.
"My hope for the FOP community is that everyone will contribute in whatever way they can to help find a cure and increase awareness, whether through volunteer service, monetary donations, fundraising, or participation in studies and trials,” he says.
Andrew was diagnosed with FOP at the age of 21 in 2008. He has been involved with the IFOPA ever since, and joined the board in 2016.
He uses his experience with design, particularly web design, to help inform and educate about FOP.
Andrew’s job consists of performing health screenings for state and corporate insurance purposes. He travels with a team to check the cholesterol/blood sugar, BMI, and blood pressure of employees and provide medical advice. He spends a lot of his spare time volunteering at his church, assisting with audio/visual needs at services and keeping the website up-to-date.
“My one hope for the IFOPA community is that there will be a cure one day,” Andrew said. “I will do whatever I can to help make it a reality.”
Danielle first learned of FOP when her best friend Amy Gordon’s son Zip was diagnosed five years ago. She has assisted the Gordon family with their annual ZipperQ barbecue ever since.
Her passion to help find and fund a cure for FOP inspired her to join the IFOPA Communications and Public Relations Committee in 2016.
As an Information Technology manager with the Aerospace and Defense field, Danielle assists in leading global programs for internal IT infrastructure.
Her current role, as well as previous work as a nonprofit case manager for individuals living with disabilities, has positioned her to provide valuable insight for the IFOPA in communications and international education.
“I would truly enjoy seeing the IFOPA Board continue to increase educational capabilities for both the FOP community as well as the amazing professionals who support individuals with FOP,” she said. “My main hope for the FOP community is to find a cure.”
Joe’s daughter, Ashley, was diagnosed with FOP at the age of 12. From the beginning, Joe devoted his efforts to fundraising and raising awareness of FOP. Multiple events have been held in honor of Ashley by Joe and his family, as well as the community in which they live, bringing in nearly one million dollars to support FOP research at the University of Pennsylvania, as well as the FOP Connection Patient Registry.
Joe practices law in New York and focuses in areas of technology and government. As a board member, Joe’s experience allows him to look at issues objectively and provide opinions taking into consideration legal, ethical and policy concerns.
Joe wants to first and foremost provide academic researchers and pharmaceutical companies the necessary support to have the resources needed to find treatments and a cure for FOP. Joe believes there are no incurable diseases, only diseases which we have not yet found a cure, and FOP is no exception. Continued research provides the hope for Ashley and all those living with FOP so that one day they will not have to fear what tomorrow will bring.
Gary’s connection to the IFOPA is through his daughter, Natalie, who was diagnosed with FOP at the age of 10 in 2011. 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, 28 of which were spent in the treasury department of Dow Chemical, where he currently serves as Vice President and 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. Gary says 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.
Megan’s son, Hayden Pheif, was diagnosed with FOP in 2002 at two and a half years old. Megan and Hayden’s father, John, held the inaugural Hayden’s Hope Fundraiser in 2003, and have been fundraising for the IFOPA ever since. Megan served as Vice President on the IFOPA’s Board of Directors in 2005.
She works in the commercial interiors industry in San Francisco, and specializes in business development and marketing for commercial furniture, textile and data infrastructure companies.
Megan is excited to join the board again and work with the other amazing board members to continue to grow the IFOPA’s efforts.
Megan says, “I dream that some day no child will ever have to suffer from FOP and that parents will never have to receive the horrifying news that their child is growing a second skeleton…that a child diagnosed with FOP will have a real childhood and that parents can take a deep breath and let them run free.”
Rory’s daughter, Sienna, was diagnosed with FOP at the age of two in 2012. She joined the IFOPA Board in the fall of 2014.
With over 15 years of experience in brand management, strategy and innovation under her belt, Rory currently works for an independent manufacturer of over-the-counter healthcare products. She holds a Bachelor’s of Arts from Princeton University in Psychology, and a MBA from Columbia Business School.
“Delivery of our vision is within reach, thanks to the hard work of previous board members, patients and researchers,” she says. “I am energized to help push the IFOPA to achieve our mission of finding a cure for FOP, and ensuring it is accessible worldwide.”
Nancy is one of the founding members of the IFOPA. In the early years she served as Vice President, Treasurer, and developer of the original FOP Connection newsletter.
Nancy was diagnosed with FOP at age five, and didn’t know anyone else with FOP until she became friends with Jeannie Peeper in her 20s. Their conversations led them to realize the need for a group “so others with FOP didn’t have to be isolated, and to allow us to share ideas, hopes and dreams.”
She earned a certification in computer programming, and has worked in contract programming and accounting. Nancy does her own bookkeeping for her care staff, and manages all aspects of hiring, training and managing her care staff.
Nancy currently serves as chair on the Mentor Program Committee where she continues a role she has informally carried out in the past. As chair, she continues to provide support and share her extensive knowledge of how to cope and adjust to everyday FOP-related challenges.
“The board works diligently to keep focus on our goal of finding a treatment or cure for FOP,” she says. “My hope for our community is that we can continue to learn, encourage and inspire one another to the best of our abilities.”
Carol J. Tilley has been an IFOPA Board member since January of 2016. She became acquainted with the IFOPA through the Brinkman Family in 2015. Carol has since served on the Executive Director Search Committee, the Strategic Planning Committee, and is currently on the Board Development/Nominating Committee.
As President of CJ Tilley and Associates, Carol’s focus has been on assisting nonprofit healthcare management teams in assessing organizational effectiveness and creating strategies to increase capacity and maximize strategic organizational outcomes.
Carol’s experience with nonprofit healthcare organizations and their boards has prepared her for service on the IFOPA Board by providing external perspectives that complement those of other board members and the IFOPA community. As a board member, she plans to continue her contribution to building a strong organizational structure that supports the IFOPA vision, mission, and goals.
In looking toward the future, Carol joins with the IFOPA community in its vision of finding a cure for FOP while raising awareness of this disease throughout the world. She says, “I hope that through the combined efforts of the researchers, physicians, IFOPA families, the Board, donors, and supporters throughout the world, the IFOPA will continue to take crucial, courageous - even daring steps - to make the IFOPA vision for a cure a reality.”
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.