IFOPA Board of Directors and Officers
Jeannie Peeper
President and Founder
Retired Board Member
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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 677 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.
Mark Gambaiana
Chairman of the Board
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Our family became members of the FOP community in March 2009, when our grandson, Lincoln Wheelock, was diagnosed with the condition. I am joining forces with those dedicated to this cause to expand awareness, help continue the high level of service to FOP families the IFOPA has provided in the past, and generate gift resources to accelerate treatments (and eventually cure) for FOP. Since 1985, I have been involved in the advancement activities of various colleges and universities, holding positions in public relations, alumni relations and fundraising departments. Currently, I am the Vice President for University Advancement at Truman State University in Kirksville, Missouri. One of my responsibilities at Truman is to guide the university through its first-ever comprehensive fundraising campaign, a $30 million initiative entitled "Bright Minds Bright Futures". Previously, I served as alumni director and major gifts officer at Morningside College (my alma mater) in Sioux City, Iowa; Director of Development at Iowa State University in Ames, Iowa; and a fundraising consultant with the firm of Gonser Gerber Tinker Stuhr in Naperville, Illinois.
Jennifer Snow
Vice Chariman of the Board
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I would like to take this opportunity to introduce myself to IFOPA members as well as update the FOP community about my family. My name is Jennifer Snow and I live in Santa Maria, California. I am the proud mom of two wonderful daughters, Stephanie, age 18, and Ashley, age 14. My husband, Bob, and I stay busy raising two daughters, as well as working for our small family-owned construction company. Our daughter, Stephanie, was diagnosed with FOP at the age of three, and we were as devastated as any family dealing with this new diagnosis. We took our grief to our community, where we have been blessed by its love, prayers and support of our annual fundraising efforts to "Find-A-Cure" for FOP for the past 16 years. I have also been honored to previously serve on the IFOPA board for many years. After fulfilling my IFOPA board term and assisting with the planning of the 2007 Symposium, Stephanie became very ill with a secondary neurologic condition. Stephanie was treated at UCSF Children's Hospital from September 2007 until April of this year, where she was hospitalized a majority of that time period. Although we are still working on understanding the cause and better treatments for this new condition, Stephanie is doing much better. I look forward to working on the IFOPA board again as I am excited to assist in mentoring the young adults of our community (such as my daughter, Stephanie), to continue the mission of the IFOPA that Jeannie Peeper incepted over 20 years ago. I also look forward to continuing our fundraising efforts, as well as working with other FOP members and their families to insure the funding needed to continue research to fulfill ultimate mission - to FIND A CURE!
Gail Weakland
Treasurer
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My name is Gail Weakland and I live in Ellicott City, Maryland. I am licensed as a certified public accountant and also as a certified financial planner. I have worked in public accounting since 1983 and became an owner in Huber & Weakland, P.C. in 1993. The Company provides accounting, tax and auditing services to businesses, individuals and not-for-profit organizations. In 1999, Huber, Weakland & Associations, Inc. was established to provide financial planning and investment advisory services. Our family has been blessed with six grandchildren, one of whom is Justin Henke. Justin lives in Middletown, Delaware and in 2006, at age 6, was diagnosed with FOP. In the past two years, I have met several other FOP families here in the Mid-Atlantic area at FOP fundraising events and have met some of the staff at the FOP lab at the University of Pennsylvania. These individuals display the determined dedication necessary to find a cure for FOP. We are so grateful for them. I would be honored to serve as a member of the IFOPA Board. In addition to serving as an accounting reporting resource, I am interested in exploring additional fundraising methods for the IFOPA.
Malcolm Munro
Secretary
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I became associated with the IFOPA in 2007 when my granddaughter, Miranda Friz, then age two years and four months, was diagnosed with FOP. I was elected to the IFOPA Board in 2009 and served as Secretary for most of the 2009-2010 term, and as board chairman for 2011. I am currently serving as Secretary for the 2012-2013 term. For 2009 and 2010, I was also chairman of IFOPA's International President's Council, recruiting and working with representatives from various countries throughout the world. I have a Ph.D. in Management Information Systems from the University of Minnesota. In 2007 I retired from my academic career at the University of Calgary in Canada, where I spent many years in senior administrative positions. In the six years prior to my retirement I served as vice president and board member of a 4000-member academic association. My daughter, Karen Munro (Miranda's mom), is an active participant in the Canadian FOP Network and author of a blog about her experiences as a parent of a child with FOP.
Moira Liljesthrom
Board Member
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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 Moira2 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 to get FOP better known and contribute to the diagnostic process. Since 2007 I have been ambassador of the IPC for Argentina. My goal is that FOP will be much better known and that in my country we can have an expert team of health professionals to help people affected.
Nancy Sando
Board Member
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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.
Christine Ford
Board Member
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I am the maternal aunt of IFOPA member Jeannie Peeper, and I have been keenly 
aware of the devastating effects of FOP for many years. I am well acquainted with the organization's work and goals. During my career, I managed two family businesses—an auto parts store and a flower/gift shop specializing in event and wedding planning. I also spent 22 years working for the Los Angeles County Employees Retirement Association (LACERA), which serves approximately 100,000 employees. I began my career with LACERA in its Member Services Division and rose to become a Senior Retirement Specialist. As such, I dealt with legal and procedural issues, and I trained staff in retirement and health benefits. Since retiring to Tampa nine years ago, I have volunteered at Hillsborough Children's House and with Meals on Wheels. I have previously served as a board member and secretary. I look forward to working with the Board again to expand our opportunities to serve the FOP community and raise funding as medical research develops new avenues for treatment.
Chris Bedford-Gay
Board Member
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In 2009 I received the devastating news that my eldest son, 
who was then just one, had been born with FOP. At the time my wife was expecting our second son, who has been lucky enough not to suffer from the condition. I began researching the condition, only to find that FOP was such a rare disease that there wasn’t even a charity in the UK dedicated to raising money for research into treatments and hopefully a cure. Along with my wife, family and friends, I began to run charity events to raise funds and awareness into my son’s condition. I am very keen to support and contribute to the IFOPA as they have been a great source of information and support for our family, watching Oliver go through his toddler years. As a family, we are also actively involved with FOP Action in the UK; being able to meet up with other families in the UK who are going through the same as us is a great comfort. I am in also regular contact with the University of Oxford’s FOP Research Program, which is the only team in the UK looking into this condition. All the monies we have raised so far have been shared between the IFOPA and the University of Oxford. I created a website for Oliver to keep our supporters updated with breakthrough news about FOP; to thank them for their continued support; and to celebrate all of Oliver’s milestones. In my day job, I am the CEO of a software development company and look forward to being able to use my IT skills to further develop links across the globe, raising awareness and ultimately research dollars for FOP. I have had many fantastic vacations in the USA, both East and West coast, and look forward to visiting again soon to make new friends within the FOP community. Oliver already made quite an impression in Reno then Las Vegas on his first trip at the age of two, and he can’t wait to meet Mickey and Co. in Disneyworld next!
Marilyn Hair
Board Member
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Marilyn Hair is the mother of Sarah Steele, a 26-year-old young adult with FOP. Her family discovered the IFOPA in 1991 when it was a small group of families, and they have attended all the FOP Symposia and many family events. Marilyn served on the IFOPA Board of Directors from 1994-2006. Her work on the Board included helping establish and chairing the LIFE Committee, serving on the Executive Committee, writing articles for the FOP Connection, and leading workshops at FOP Symposia. She helped Sarah transition to adulthood, including applying for Social Security and Department of Vocational Rehabilitation services, and living in the dorm while attending college. Marilyn wrote about their experiences in a 5-part series, “Sarah Goes To College”, that was published in FOP Connection and also in the Washington State Adolescent Transition Resources Notebook. Marilyn’s first career was in the United Methodist Ministry and she served as a church pastor for 17 years. She then enjoyed a 10-year “pink period” as a stay-at-home mom. Returning to school in 2004, she earned a Biology Major from Seattle Pacific University and a Master of Public Health from the Institute of Public Health Genetics, University of Washington. Her Master’s Thesis was a case study of the transition of adolescents with Cystic Fibrosis from pediatric to adult health care. She is the Program Manager in the community engagement component of a large federal research study located at the University of Washington that studies environmental health and the effects of the interaction of genetics and environment on health. Marilyn’s family includes her husband, Rick Steele, and three young adult children, Sarah, Jonathan (age 23), and Mollie (age 20). We have been a part of the FOP Community for 20 years and consider you part of our family. I am happy to be a member of the IFOPA Board of Directors again.
Betsy Bogard
Board Member
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I am the sibling of an FOP patient; my younger brother, Jud,
was diagnosed with FOP at age
2. I work in drug development for rare genetic diseases at Genzyme, a biotechnology company based in Cambridge, Massachusetts. I currently manage the development of a product being tested in clinical trials and have had the privilege to liaison with the patient community I serve. 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 be more active with the IFOPA. I have a master's degree in health policy and management from the Harvard School of Public Health and 15 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. For many years my parents were active in fundraising and supporting the IFOPA. My father, Nicholas Bogard, was a long-standing IFOPA board member and still serves as chairman of the finance committee. I live in Somerville, Massachusetts with my husband and two sons.
Gretchen Emmerich
Board Member
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Patrick Doerr (age 29), was diagnosed with FOP when he was just 5 months old. The majority of my RN career was spent in several departments at St. Louis Children's Hospital. I also worked per diem at Weldon Springs Adolescent Psychiatric Hospital, as a county supervisor for a home health agency called Strictly Pediatrics, one year at Deaconess Hospital and three years at St. Joseph's Hospital in St. Charles, MO. For the past 25 years I have held a variety of key leadership positions within the following organizations: The HOPE (Helping Other People Evolve) Organization and Christ Memorial Church (adult and child education) both located in Malvern, Pennsylvania, The Salvation Army (several committees) in Madison, Wisconsin, and Blackhawk Church (as a Care Team Leader) in Madison, Wisconsin. I have led leadership workshops, recruited and trained volunteers, headed up committees and spear headed new support groups. I hope to bring a fresh enthusiasm and draw on my past team work to serve those whose lives are affected by FOP every day. I strive toward seeing Patrick's (and all of our) dream come true of the assured cure of FOP.
Previous Chairmen:
Malcolm Munro
January 2011 - December 2011
Sara Olsen
January 2009 - December 2010
Don Brister
January 2007 - December 2008
Amanda Cali
June 2005 - December 2006
*Prior to June 2005, the IFOPA was run by Jeannie Peeper, President & Founder.
