Fourth International Symposium on FOP

by Eyal Goldshmid

Revisit the Symposium Online photo galleries Symposium sponsors FOP Connection on the Symposium (members only)

“Together, We Can Move Mountains.”

The slogan for the Fourth International Symposium on FOP couldn’t have been more appropriate.

While the event marked the first major gathering of IFOPA members, medical professionals, scientists and more since 2000, as well as a means to formally celebrate the discovery of the FOP gene with the FOP community firsthand, for many the Symposium seemed more like a chance for anyone with a connection to FOP to feel like part of a large family.

A group photo of all the FOP members who attended the Symposium taken on the final night of the event. 80 members are pictured.

A sense of unity dominated the proceedings. Old friends and acquaintances spent time catching up; those new to the FOP community took the opportunity to make new friends and gain valuable insight into living with FOP. By the time it was over, it seemed like everyone wanted the Symposium to continue.

“It was a privilege meeting and getting to know so many people during this weekend,” said Don Brister, Chairman of the Board for the IFOPA, during his closing speech.

The centerpiece of the Symposium was Dr. Fred Kaplan’s research update, which took up a majority of the first full morning of the event. In his presentation, Dr. Kaplan charted the past, present and future of the FOP community and FOP research as a whole. He discussed medical research’s first reference of FOP (in 1763), explained its genetic cause and touched on variations of it. All the while, he also showed how the FOP community had grown in the last decade, especially internationally. The presentation’s ultimate message of hope brought many in the audience to tears and drew a well-deserved standing ovation.

Hugo Fahlberg’s interpretation of the theme, “Together, We Can Move Mountains!” has been selected as the theme picture for the Symposium.

Most of the Symposium weekend consisted of workshops and clinics. During the former, attendees gathered in meeting rooms and shared experiences with one another. The workshops covered a wide range of subject matter, from tips on how to live with FOP to advocating one’s child’s needs in the education system to issues in the workplace, among others.

One of the most popular was “Makeup and Haircare,” which drew more than 50 participants.

“Watching the excited faces of the workshop attendees as they received their complimentary makeup gift bags was priceless,” said IFOPA Board Member Holly Pullano, who headed the workshop. “It goes to show that no matter what you are facing in life, we all still care about looking good, and in turn, looking good ultimately makes us feel good about ourselves.”
In the Medical Educational Research Clinic, FOP patients were seen by researchers and doctors from around the globe in an effort to help educate medical personnel on FOP. Special Care Clinics were also available to FOP patients. These provided free consultation on dental, orthodontic, occupational/physical therapy and wheelchair seating solutions.

Another highlight was the Symposium’s Resource Center. Assembled and organized by IFOPA Vice President Jeri Licht and IFOPA Member Steve Eichner, the center showcased more than 100 tools, gadgets, resources and solutions for everyday living issues, many of which were available for trial.

Evenings offered a colorful mix of gourmet food and lively entertainment. The “Together, We Can Move Mountains” Dinner, held on August 17, honored many of the people who’d helped the FOP community with fundraising and the FOP Lab with its research, including 2006’s FOP gene discovery. The Awards Dinner Banquet, held the following night, paid tribute to the folks and families who’d helped raise funds both for the Symposium itself and the IFOPA.

The Awards dinners also featured a live auction and multiple singing performances by Barbara Beck, Heather Niles, Rebecca Pullano, Connie Green and Sophia Forshtay. The evening concluded with a rousing performance of “Ain’t No Mountain High Enough” by the FOP children who attended. The lyrics to the song itself were changed for the performance, so that the chorus said, “Ain’t no mountain high enough to keep us from finding a cure.” Dressed in lab coats and toting masks of Drs. Kaplan, Shore and Glaser, the performance brought the house to its feet and even prompted Brister to call for two rousing encores.