2008 IFOPA Officers and Board of Directors

Jeannie Peeper
President and Founder
Board Member
Winter Springs, Florida

Relationship to FOP:
I am a 49-year-old adult with FOP.

Background:
I graduated from the University of Central Florida in 1985 with a B.A. in Social Work. My journey with the IFOPA 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 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 this same newsletter has grown into an amazing 20-page publication. In June 2005, on the IFOPA’s seventeenth anniversary, I retired from my full-time involvement in the day-to-day activities of the organization. I continue to serve as President, and as a spokesperson and Board Member.

Goals for the IFOPA in 2008:
I have always believed in the IFOPA as an organization and the many people that make it possible. I consider the years and hours of personal contact I have had with families as a gift, making my personal journey with FOP all the more fulfilling. 2008 is sure to be another successful year for the IFOPA. My vision and dream has always been to one day find a treatment and cure for FOP.

Don Brister
Chairman of the Board
Meridian, Idaho

Relationship to FOP:
I became involved with the FOP community in 1995 in Santa Maria, California when I agreed to help with the “Find a Cure” fundraisers started by the Snow family, whose daughter, Stephanie, was diagnosed with FOP at the age of three. I eventually joined the leadership team and agreed to act as emcee for the dinner auction, which I have done for the past 12 years.

Background:
Since graduating from Texas A&M University, most of my adult life has been in the area of marketing, public relations, human resources and grant writing. I have also managed to combine a passion for sports by doing play-by-play of high school sports on the radio since 1968. After moving to Idaho in 2004, I was asked to join the Board of Directors of the IFOPA and have served in that capacity ever since. In 2006, I was the Chairman of the Grant Writing Committee and also served on the Symposium Planning Committee. Being the Chairman during the year of the largest Symposium ever held by the IFOPA was a tremendous experience; it was rewarding and thrilling to see so many people come together for a common cause.

Goals for the IFOPA in 2008:
My goal as Chairman is to increase awareness of FOP and establish partnerships with foundations and corporations that will allow for continued fundraising. We need to build on the enthusiasm generated during the Symposium and assist those members of our community who reside outside the United States. The formation of the International President’s Council is a good beginning to that goal. We also need to provide the necessary funds to our research partners while taking the burden off FOP families.

Relationship to FOP:
Carli, my daughter, was diagnosed with FOP in September 2001, when she was in kindergarten.

Background:
I graduated from Maryville University with a major in Business Administration and a minor in MIS. I attended college part-time and taught for the American Institute of Banking while working full-time. I am a Marketing Director with Unisys in Global Financial Services. I previously spent 15 years with IBM in Financial Services and have experience in marketing, project management, sales and consulting.

Goals for the IFOPA in 2008:
My family and I have been involved in fundraising for many years, but since Carli’s diagnosis, our focus has been on fundraising and raising awareness for FOP. I enjoy serving the FOP community and look forward to continuing to learn from my FOP family.

Relationship to FOP:
My first true experience with the condition came at Halloween of 2004, when I met Hayden Pheif, son of Megan Pheif, for the first time. I have subsequently seen Hayden in all manner of activities, from swimming to skiing, and Hayden’s bravery and ongoing joy in the face of adversity inspired me to accept the invitation to seek election to the IFOPA Board.

Background:
I am currently employed at Deutsche Bank Securities as a Managing Director, running DB’s Equity Sales and Trading operations for the Western Region.

Goals for the IFOPA in 2008:
I hope to work diligently with other IFOPA Board Members and the IFOPA membership to help secure a future without FOP. I hope to accomplish this by evangelizing the FOP cause, educating the public on the FOP and raising precious funding to support research for treatments and eventually a cure.

Relationship to FOP:
I was diagnosed with FOP at age three and have been a member of the IFOPA since 1988.

Background:
I have worked for the past 11 years as an Accounts Receivable Clerk for Tax Analyst in Falls Church, VA. I also work part-time as a Sales Consultant for the Avon Corporation. Prior to 1996, I was self-employed as a Lady Remington Jewelry Consultant for one year and was responsible for maintenance of my own inventory and financial records. I have a Masters Degree in Russian Studies with a Minor in International Business, and a Bachelor’s Degree in Russian Studies with a Minor in Spanish and French from American University in Washington, DC. I have been a member of the Alumni Chapter of the Alpha Kappa Alpha Sorority in Prince George’s County, MD since 1991.

Goals for the IFOPA in 2008:
I plan to enhance the outreach program and organize a grassroots campaign to lobby each Member of Congress for research funding. Since Congress is preparing to override the President’s veto of legislation on the State Children’s Health Insurance Program, the IFOPA cannot afford to miss this window of opportunity to bring FOP awareness to the forefront. I will be an asset to the Board because of my experience and knowledge of FOP. I can give the parents of young adults insight into coping with the disease. I know what the needs are and can promote living independently. I will be an inspiration to others living with FOP. I believe you can attend college and have a career with the support of family and friends.

Relationship to FOP:
My nephew, Hayden Pheif, was diagnosed with FOP four years ago.

Background:
I have more than 13 years of operational experience in a series of industries, including real estate development, interior design and high technology. For the past five years, I have focused on real estate development, most recently completing an $11 million conversion of a vacant hospital building on Central Park North in Manhattan. In 1999, I started HauteDecor, a web-based portal for Interior Designers and Architects, and raised more than $12 million in venture financing for the company. I spent seven years in high technology, primarily with Macromedia, where I was responsible for a $35 million P&L — more than 30 percent of the company’s revenue. I hold a B.A. from the University of California, Berkeley, and an M.B.A. from Harvard University.

Goals for the IFOPA in 2008:
Since Hayden was diagnosed with FOP, I have been actively involved with the Hayden’s Hope fundraiser spearheaded by my sister, Megan Pheif. I am looking forward to being more actively involved in the IFOPA as a whole.

Relationship to FOP:
My niece and goddaughter, Carli Henrotay, is an FOP member.

Background:
I work for The E.W. Scripps Company, where I am the head of finance and administration for the newspaper division. I am a CPA and received my bachelor’s degree in accounting from Saint Louis University. I am also very active in industry organizations and sit on the board of the Inland Press Association.

Goals for the IFOPA in 2008:
I am honored to have been elected to sit on the Board and look forward to working with all of the wonderful people who have already offered so much time and talent to the IFOPA. I would like to increase awareness of FOP for the purposes of education and fundraising.

Relationship to FOP:
My son Daniel, who is now 13, was diagnosed with FOP on his third birthday.

Background:
Once the shock of the FOP diagnosis began to lessen, my husband Peter and I decided that the best way to help Daniel was to help everyone with FOP by fundraising and volunteering for the IFOPA. In 1998, I was elected to the Board of Directors, and since then I have worked with many wonderful people on a variety of projects, such as: chairing the Membership and Fundraising Committees; helping create Overcoming Obstacles (the database of FOP-specific resources on the IFOPA’s web site); chairing the Symposium Resource Center Committee (which organized a collection of adaptive equipment, tools, resources and ideas for the Fourth International Symposium on FOP); sitting on the IFOPA Executive Committee from 2000 through Dec. 2007; and serving as IFOPA Secretary (from 2002 to 2006) and Vice Chair in 2007. I am grateful for the opportunities the IFOPA has given me to help those with FOP. Doing so has been personally and professionally satisfying, helped me feel less helpless in front of FOP, and strengthened me for the future.

Goals for the IFOPA in 2008:
In the upcoming year, I would like to work toward the following goals for the IFOPA: (1) Update and enlarge the Overcoming Obstacles database so it includes new information from the 2007 Symposium Resource Center and other relevant web sites/catalogues etc. and is more user-friendly; (2) Establish a continuing system for seeking and securing grant money for the IFOPA’s various projects and programs; and (3) Monitor and revise IFOPA documents as needed or requested.

Thank you for allowing me to serve as a Board Member. I promise to live up to the trust, faith and confidence the membership and Board of Directors have shown in me.

Heather Wiley Starankovic
Board Member
Philadelphia, Pennsylvania

Relationship to FOP:
It is through my position at the University of Pennsylvania that I encountered my first individual with FOP, and as the relationships have grown over the years, so has my desire to learn and contribute more to the fight for a cure and treatment for FOP.

Background:
I work at the University of Pennsylvania, fundraising for several departments in the health system and managing the endowment and generous contributions made to UPENN by the families and friends of those living with FOP. I have been a fundraising professional for a decade and have never met such a kind, cohesive and inspirational group of individuals as the FOP community, which always exhibits such contagious enthusiasm for positive change. My education experience includes two Bachelor of Arts with honors from Kent State University, one in Art History and one in Anthropology, and I hold a Master of Arts, Public Culture, from UPENN. I also have earned Certificates in Fundraising and Nonprofit Management, respectively. Presently, I am on the Board of the University City Arts League and a Youth Group Leader for Holy Trinity Lutheran Church.

Goals for the IFOPA in 2008:
I hope to raise awareness of FOP through a grass roots fundraising initiative that aims to generate funds to support the care of those living with FOP and towards discovering a cure.

Back to Top