Connecting, Learning and Growing at the IFOPA’s 2017 FOP Family Gathering

So much accomplished in this two-day meeting

FOPFamilyGatheringDec2017_SanFranFNL.jpgThe theme of the 2017 FOP Family Gathering, which was held December 1-3 at the Palace Hotel in San Francisco, California, was “Connect. Learn. Grow.”

  • Connect – FOP families discussed life updates with old friends, connected with first-time attendees, and shared personal goals and hopes with one another.
  • Learn – FOP families heard the latest updates from FOP experts and experts in related topics like pain management and mobility.
  • Grow – You can see through their comments how attendees grew from attending the Gathering.

“I was most grateful about meeting new people, seeing all the progress in the trials, and especially my son meeting and making new friends.” 

“So grateful for the opportunity to learn important information from diverse and excellent faculty. So appreciative of the opportunity to speak with people living with FOP in learning about their experience and needs.” 

“I am so grateful for the opportunity to have my child associate with kids who are walking the same path. How wonderful it is to have a FOP family that understands what you are going through!” 

“Extremely grateful for the chance to connect with other FOP families as well as the wonderful doctors in a non-clinical setting. The FOP community is truly a family and these Gatherings are like family reunions that maintain important bonds that help us all move forward together.”

Dr. Kaplan opened the Gathering with his presentation on the 26th Annual Report of the FOP Collaborative Research Project. He said, “Insights often come at the strangest moments – and in the most unexpected places.” He went on to explain that identifying targets is the first step in FOP research. These serve as a guide, and Dr. Kaplan believes they will soon lead to the discovery and development of numerous FOP therapies.

The meeting continued with a presentation from Adam Sherman, Research Development and Partnerships Director with the IFOPA, titled “The IFOPA: Supporting and Enabling the FOP Research Community.” Adam shared the breadth of the IFOPA’s involvement in research – from funding of basic research at the University of Pennsylvania to therapy development funding through the Competitive Research Grant Program to developing research infrastructure through projects like the FOP Registry, FOP Mouse Model and FOP Biorepository to promoting research connections through the Drug Development Forum. 

During a second presentation about the FOP Registry, Adam encouraged FOP patients to complete their enrollment and 6-month follow-up surveys. The contributions of every FOP patient in the Registry are helping the IFOPA achieve its overarching goal of stewarding one coordinated and shared registry program that will benefit all people living with FOP, clinicians, physician researchers, and the biopharmaceutical industry.

Dr. Ed Hsiao of the University of California, San Francisco, later shared updates and key findings from the Clementia Natural History study. He emphasized, “Previous biopsies and misdiagnoses [in FOP patients] are common, but that number is falling.”

The Common Health Questions of FOP’ers Panel, with Drs. Ed Hsiao, Fred Kaplan and Bob Pignolo gave patients an opportunity to ask the questions that are most important to them. Attendees learned the most common question Dr. Kaplan hears is “Can an FOP’er get a tattoo?” Dr. K says yes – but only if the FOP’er’s mom gives permission.”

Back by popular demand, Dr. Zvi Grunwald shared what FOP families need to know about surgery and anesthesia. While Dr. Clive Friedman was unable to join the FOP community at the 2017 Family Gathering, you can see his presentation on oral health and FOP that was presented at the 25th Family Gathering.

Dr. Jet Lee discussed balance and stability as an injury prevention strategy and shared exercise tips, including information about aquatic therapy. She also highlighted products like the Dycem mat, which prevents tableware from slipping, and the Nosey cup, which features a cutout that makes drinking easier for people with limited head movement. You can find these products and others on the IFOPA’s Pinterest page.

Drs. Xiaobing Yu and David Becker addressed pain management in FOP. While Dr. Yu focused on evidence-based pain management, Dr. Becker discussed integrative approaches to pain and symptom management, including the use of CBD Oil. A group of families stayed after the presentation for a small group discussion with Dr. Becker.

IFOPA Executive Director Michelle Davis and Anitha Devadason shared about IFOPA programs and services and ways families can get involved, including awareness generating and fundraising activities like Team #cureFOP. Future IFOPA offerings were discussed and invited patients and families were invited to share their “wish list” items for IFOPA programs and services. You can send yours to [email protected].

Sunday’s focus turned to Clinical Studies & Trials and You. Representatives from both Clementia and Regeneron gave presentations about their clinical trials. Learn more about these trials which are currently recruiting patients. Adam Sherman and Genetic Counselor Dr. Marta Sabbadini addressed the topic of clinical trial participation, specifically about deciding which trial to participate in and responsibilities of clinical trial participants. Dr. Sabbadini emphasized the need for clinical trial participants to keep detailed and complete journals. Writing down every symptom or side effect, whether it may or may not have to do with the drug itself, is critical for trial success. She suggested focusing on a greater good when going through a clinical trial, as desired results for the patient might not be accomplished during the trial, but their participation is instrumental to advancing FOP research.

You can access presentations from the Family Gathering online.

Families also had the opportunity to participate in several clinical studies being offered by The Hsiao Lab at the University of California, San Francisco, as well as FOP Clinic appointments with Drs. Hsiao, Kaplan and Pignolo. Families also took time to share their FOP story with a video production crew and team of IFOPA writers.

There was a lot accomplished in a two-day meeting. From conversations at meals and breaks to questions asked during presentations, the Family Gathering continued important conversations and initiated new ones which are sure to help families, clinicians and researchers now and in the future.

View photos from the 2017 Family Gathering

Plans are underway for the 2018 Family Gathering. If you’d like to stay informed and receive Gathering-related announcements, please send an email to [email protected].

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