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. I continue to serve as President and spokesperson.
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 Munro is the mother of Miranda Friz, who has FOP and is currently 11 years of age. Karen lives in a suburb of Vancouver, British Columbia, Canada, along with her husband, Peter, and her children, Miranda and Owen (age 14). Karen is a lawyer who practices personal injury law for the law firm of Stephens and Holman. In between raising her family and work, Karen has also been a board member with the Canadian FOP Network since it was founded in 2009, and has helped organize and coordinate two Canadian FOP family conferences. In addition, Karen volunteers for a number of charities including Girl Guides of Canada, Access Pro Bono and the Rare Disease Foundation. Finally, since 2010 Karen has written a weekly blog about coping with her daughter’s FOP on the website “Friends With FOP” (www.friendswithfop.com). For relaxation, Karen enjoys baking and reading, especially fantasy, historical fiction and science fiction.
I live in Dunnellon, Florida. Prior to retiring in 2012, I worked in public accounting at Huber & Weakland, P.C. which is located in Ellicott City, Maryland. The firm provides accounting, tax and auditing services to individuals, trusts and businesses, including not-for-profit organizations. A related entity, Huber, Weakland & Associates, Inc., provides financial planning and investment advisory services. I am currently licensed as a certified public accountant and previously held a license as a certified financial planner. I graduated from the University of Baltimore in Maryland.
In 2006, time stood still for our family when our grandson, Justin, was diagnosed with FOP. Since then, I have been privileged to meet FOP patients, their families and friends, the staff at the IFOPA office in Florida, and some of the staff at the FOP research lab which is located at the University of Pennsylvania. All of these individuals display the determined dedication necessary to find a cure for FOP. Our family is so grateful for them. In 2010, I joined the IFOPA Board of Directors and have served as Treasurer and on the Finance and Audit Committees. I have been honored to serve the IFOPA in this way.
I am president of Fundación FOP in Argentina. I live with my husband and our two children in Buenos Aires. My smallest child was diagnosed with FOP in 2001 when he was 4 years old. I am an architect and have a master’s degree in Urban and Regional Planning. I have worked as a researcher since 1990 and as a professor at the Universidad de Buenos Aires since 1995. Since my son was diagnosed, my husband and I began to work for the FOP cause in our country, trying to spread the word among the community and health professionals. We want to spread FOP Awareness and contribute to the diagnostic process of our local doctors. Since 2007 I have been the IPC ambassador for Argentina. The goals I have for my country are for all health professionals to be aware of FOP and form a team of expert health professionals to help people affected with FOP.
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.
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.
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 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.
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.
Global Research Development Director
My younger brother, Jud, was diagnosed with FOP at age 2. My engagement with patient organizations and the rare disease community at large has been inspiring, as has my little brother, in my career and in my desire to serve the IFOPA. Currently as the IFOPA's Global Research Development Director, I'm working on the FOP Connection Registry and developing relationships with institutions and pharmaceutical companies to help find a treatment for FOP. I have a master’s degree in health policy and management from the Harvard School of Public Health and 17 years of experience in the biotechnology industry in areas that include clinical trials management, health economics research, post-marketing studies, disease registries, and program management. My past experiences include working in drug development for rare genetic diseases at Genzyme, a biotechnology company based in Cambridge, Massachusetts. Here I led the development of a product being tested in clinical trials and have had the privilege to liaison with the patient community I serve. For many years my parents were active in fundraising and supporting the IFOPA. My father, Nicholas Bogard, was a member of the first IFOPA board of directors and still serves on the finance committee. Today, I live in Somerville, Massachusetts with my husband and two sons.
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.