2019 Family Gathering

The 2019 Family Gathering was held Nov. 14-17 in Orlando, Florida. We welcomed nearly 50 families and just over 200 attendees for a weekend of connection, learning, and growth. For a snapshot of the weekend's activities and to view the photo gallery, click here. To watch the Family Gathering highlight video, click here.

We are pleased to share recordings of presentations from the following speakers.

For translated subtitles of the recordings please follow these instructions. Please note that the subtitles provided are auto-translated. The translations are not professionally translated and may include some inaccuracies in names and meaning.

The IFOPA: Fundraising and Family Services

Team #CureFOP Fundraising
Cathryn Roys, Community Fundraising Manager, talks about the current and upcoming opportunities to fundraise for the IFOPA and some important tools to use as you explore starting your own fundraiser.

The IFOPA and FOP Community Partnership: Supporting Families Together
Family Services Manager Hope Newport, CCLS discusses several opportunities to integrate the knowledge of the FOP community in IFOPA programs for optimal impact and support.

A Research Update and Q&A with FOP Experts

FOP: The Leaky Faucet
Fred Kaplan, MD discusses examples of various ways to fix a leaky faucet depending on the cause and effect of the leak. We appreciate his explanation of the tools we may have available one day to make life better for people with FOP.

Common Health Questions From the FOP Community

The top medical experts in FOP answer questions from the community including diet concerns, flu shots and potential costs of treatments that may be developed.

Panelists include Drs. Mona Al Mukaddam, Ed Hsiao, Fred Kaplan and Bob Pignolo.

Clinical Studies & Trials and You

Understanding Clinical Studies and Trials
Genetic counselor Kelly Barrow, MSc provides an overview of the drug development and approval process and the role you play in clinical trials.

FOP Patient Registry: Patient-driven data for a cure
FOP Registry Project Director, Sammi Kile, discusses the patient registry and how it is one of the greatest opportunities for individuals with FOP to contribute to research.

SUPPORTING THE ENTIRE FOP INDIVIDUAL AND FAMILY

Dental and Anesthesia Experts Panel for Common FOP-related Dental Questions
FOP dental experts Corrie Crowe, DDS and Clive Friedman, DDS, are joined by Anesthesiologist Zvi Grunwald, MD as they answer questions from the community and discuss preventative and restorative dental care.

Living Well with FOP and the Ability Toolbox Program
FOP community representatives and Family Services Coordinator Karen Kirchhoff, MSPT discuss how you can use tools in a variety of ways to support continued independence, boost confidence and promote a balance for caregivers.

Panelists include Erin Danzer (and her service dog Pine), Steve Eichner and Kristi Gonzales

Pain Management in FOP Panel
Xiabing Yu, MD, Ellen Lenox-Smith, cannabis advocate and Gloria McCahill, energy medicine practitioner discuss a variety of different options for managing pain associated with FOP flare-ups and new bone growth.

Surgery and Anesthesia

What You Need to Know About Surgery and Anesthesia with FOP
Anesthesiologist Zvi Grunwald, MD explains how to prepare for surgery and considerations for anesthesia relevant to the FOP community.

 

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