IFOPA Board of Directors and Officers
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.
Paul Brinkman, a Minnesota native, earned bachelor and master degrees in philosophy, taught philosophy for a time, and then earned a PhD in higher education administration in 1981. From that time until late 1990, he worked as a senior associate for the National Center for Higher Education Management Systems in Boulder, Colorado, USA, conducting research relating primarily to the economics and finance of higher education. This work led to numerous publications and presentations, as well as consulting activities with federal and state agencies, colleges, and universities across the country. Starting in 1991, Paul worked at the University of Utah, initially as the Director of Planning and Policy Studies and then in 1998 through retirement in 2011 as the Associate Vice President for Budget and Planning. He interacted with senior leadership across campus including those with responsibilities for research and health care. During these years he remained active in national associations and gave presentations or did consulting work in a number of foreign countries. His granddaughter, Sona, was diagnosed with FOP in 2013, at the age of five. When IFOPA Board Member and Secretary Mark Gambaiana stepped down in September, 2014, Paul became an interim member of the IFOPA Board, then served as Board Vice Chair through 2015.
Claremore, Oklahoma native Amy Gordon is a fourth-generation employee of her family’s business, Melton Chrysler Dodge Jeep. A tight-knit group, she works daily with family members, including her brother, parents and uncle. The tight-knit family was tested in July 2011, when Amy’s son, Zip, was diagnosed with FOP. The Meltons rallied ‘round Amy, her husband Jacob, daughter Arlie and Zip. Wanting to do their part to raise awareness and funds for FOP research and IFOPA programs, the Gordons founded ZipperQ, which is a family-friendly barbecue competition. Four years strong, other ZipperQ activities at the event include both silent and live auctions, live music and free games for kids. The finale of the event is when Zip draws the winner of a brand-new vehicle from Melton Sales. Amy is active in several local organizations. She is also a co-founder of local media company moreClaremore.com, which was created from a need she noticed while recruiting help for ZipperQ. She is honored to be serving on the IFOPA board.
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.”
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.
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.”
I live in Albany, New York with my wife Diane and our two daughters, Megan and Ashley. Ashley was recently diagnosed, at the age of 12, with FOP. This was extremely difficult news for our family to accept and as a father I am committed to do everything I can to help my daughter, as well as others, overcome this disease. A treatment would enable those afflicted with the disease the ability to experience life to the fullest without fear from the effects of FOP. I am fortunate to have a very supportive network of family and friends who have rallied behind this cause. In the short period of time since we have become part of the FOP community we have, along with the support of the IFOPA, organized multiple fundraising events as well as set up an infrastructure to support them. Please visit our website http://fopashleyscure.org Hope for a treatment will only be possible through continued funding to support research and awareness. On a professional note, I graduated from New York University with a degree in Information Sciences and attended Brooklyn Law School for my law studies. I have worked in private law practice as well as the computer software industry. Currently I practice law in Albany, New York with a focus on information technology and cybersecurity issues.
Gary McGuire is Vice President and Treasurer for The Dow Chemical Company. Mr. McGuire joined Dow Canada in 1988 as a Materials Management Analyst in Sarnia, Ontario and later moved to Fort Saskatchewan, Alberta. He held several positions in Materials Management before joining the Treasury group of Dow Canada in Sarnia, Ontario. Mr. McGuire left Dow in 1993 to join Royal Bank of Canada in Toronto as a Senior Corporate Risk Consultant. In 1995 Mr. McGuire rejoined Dow in Midland as a Financial Risk Manager and relocated to Horgen, Switzerland in 1999 as Director of Financial Risk Management for Europe and later Europe and Asia. In 2002 he returned to Midland to assume the role of Senior Director of Financial Planning and Operations and was promoted to Global Director of Enterprise Wide Risk Management in 2007. McGuire became Chief investment officer in June 2007 overseeing the investment of over $30 billion dollars in pension and insurance assets for the company. He was promoted to assistant treasurer in January of 2016 and becomes treasurer on April 1, 2016. Mr. McGuire is a board member of Dorinco Reinsurance Company and Liana Limited. He is also chairman of Dow’s Investment Committee. Outside of Dow Mr. McGuire is Chairman of the Mid Michigan Health Investment Committee and a member of the Finance Committee. He is Chairman of Board of the Dow Chemical Employees Credit Union and a member of the Dow Chemical Employees’ Credit Union Asset and Liability and Credit sub-committees. Mr. McGuire holds a Bachelor of Commerce from the University of British Columbia, Vancouver, Canada. In August of 2011 Gary’s then 10 year old daughter Natalie McGuire was diagnosed with FOP by Dr. Kaplan in Philadelphia. Gary is originally from British Columbia, Canada but now lives in Midland, Michigan where he works for The Dow Chemical Company. Gary is married to Abbie McGuire and has four children – Conner 21, Keegan 18, Natalie 15, and Bingham 2.
My husband and I became members of the FOP community when our daughter, Sienna, was diagnosed at age 2 in 2012. We are energized by the great work the IFOPA is doing to progress research for effective treatments and ultimately a cure. Together with our family and friends, we have raised over $300,000 for the IFOPA through efforts such as Sienna’s Splash Swimathon and SiennasFlowerGarden.com. I currently manage the Oral Care business for Prestige Brands, and have previously worked for Dr Pepper Snapple Group, Revlon, and Time, Inc. I hold a BA from Princeton University and an MBA from Columbia University. I look forward to using my marketing skills to help lead the IFOPA Communications and PR committee. I am encouraged by the state of FOP research today and the start of the era of clinical trials in 2014. I believe that through the work of this board, FOP researchers, pharmaceutical companies, and participation from FOP patients worldwide, an effective treatment will be approved during Sienna’s lifetime. Sienna believes in that day too, and calls it the day we will finally stop telling her to “slow down!” and “be careful!”
I was diagnosed with FOP at age 5 and currently live in Petoskey, Michigan. As the IFOPA was being organized, I held a variety of positions including the Vice President’s position for ten years. My late husband, Andy, and I owned and operated a variety of small businesses. I have a background in computer programming and have dedicated my life to helping people find ways to enrich their own lives and the community in which they live. I have also authored a few helpful guides for dealing with FOP. I have an unusual insight regarding FOP. Not only have I risen to the challenge of dealing with the physical limitations of FOP, but I also was witness to how it affected my husband. You could say I’ve “been on both sides of the bed”. I am hopeful that I can bring knowledge and experience so the IFOPA can remain strong in supporting its members and its research.
Carol J. Tilley of St. Louis, MO is currently President of C. J. Tilley & Associates, a consulting firm founded in 2000, whose mission is to assist not-for-profit organizations in the areas of leadership development/ organizational development, capacity building. Prior to this, Carol served for five years as Executive Director of the Center for Leadership Excellence at the Catholic Health Association. Here she was responsible for the overall coordination of CHA's leadership development activities for over 1200 member organizations. In the course of her career, Carol has been a director of organizational development and training in a health care setting, assistant vice president of professional development in a financial institution, senior consultant and methods specialist in a manufacturing environment, and associate professor of philosophy at Southern Illinois University. She has worked with senior management of major corporations, both nationally and internationally, serving as consultant, facilitator, and trainer. Carol received a Master of Arts degree in Philosophy from Duquesne University a Bachelor of Science degree in mathematics and chemistry from St. Louis University. She serves on a number of non-profit Boards and is a volunteer with the YMCA, the Make a Wish Foundation, The Ronald McDonald House and the St. Louis Zoological Association. Carol came to know the IFOPA through Paul Brinkman.
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.