2020 Virtual FOP Family Gathering

The 2020 FOP Family Gathering was the first, but certainly not the last, virtual meeting! 

Read a recap of the 2020 Virtual Family Gathering here!

If you registered and didn't get a chance to attend or would like to go back you and revisit the Gathering, you can log in at this link to:

  • Listen to a session again
  • Watch a session you missed
  • Further explore the Exhibit Hall resources

General session recordings for the majority* of presentations are now available on the IFOPA's 2020 Virtual Family Gathering YouTube channel. This form of access may be especially useful for:

  • Sharing presentations with local health care providers or family members who did not register for the event
  • Accessing translations as the live event translation services have ended. For translated subtitles of the recordings, 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.

*Some general session presentations are not available due to permission from presenters.

The IFOPA: Fundraising and Family Services

Friendraising and Fundraising to Help Cure FOP
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.

Connecting and Supporting Families for a Stronger FOP Community
Family Services Manager Hope Newport, CCLS and Family Services Coordinator Karen Kirchhoff, MSPT discuss how IFOPA Family Services programs partner with the FOP community for optimal impact and support.

FOP Expert Insight

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 for FOP Medical Experts Panel (International Treaters)
Four international medical experts in FOP answer questions from the community on topics including FOP and COVID-19, FOP and Childhood, FOP and Dermatology, and FOP and Physiotherapy.

Panelists include Drs. Richard Keen, Christian Scott, Patricia Delai and Genevieve Baujat.

Dental and Anesthesia Experts Panel
FOP expert anesthesiologist Zvi Grunwald, MD explains how to prepare for surgery and considerations for anesthesia relevant to the FOP community. FOP dental experts Corrie Crowe, DDS and Clive Friedman, DDS answer questions from the community and discuss preventative and restorative dental care.

FOP Research 

How the IFOPA Advances FOP Research
Adam Sherman, IFOPA Research Development & Partnerships Director, shares about the variety of ways the IFOPA supports FOP research.

Patient and Family Involvement in Clinical Research
Kendall Davis, MPH provides an overview of the drug development and approval process and the role you play in rare disease clinical trials.

Participating in the FOP Registry
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.

FOP Clinical Trials, Part 2: Incyte Corporation
Incyte Corporation presenters Kurt Brown, MD, Heather Jones, RN and Paul Smith, PhD provide information on the history of Incyte, how their compound INCB000928 works and their plans for an FOP clinical trial in 2021.

Supporting the Entire FOP Individual and Family

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 Ana Laura Tavares, Brian Harwell and Kristi Gonzales.

FOP Pain Management Panel
Peter Abaci, MD, Debra Kimless, MD and Karen Harrison, EdS discuss a variety of different options for managing pain associated with FOP flare-ups and new bone growth.

Complementary Therapies Panel
Michel Lemoine, MD, PhD, Genevieve Baujat, MD, Kelle Oestreich MSHS, RRT and Veronica Winkler, MS, CCC-SLP 
discuss how physiotherapy, speech therapy and respiratory therapy can be useful resources for individuals living with FOP.

Questions about the Family Gathering?

If you have questions about the 2020 Virtual Family Gathering, please contact Hope Newport, Family Services Manager, at [email protected] or +1 (785) 294-1607.


SPONSORSHIP & ACKNOWLEDGEMENTS

Visionary Sponsors



  

 

Leadership Sponsor

Gathering Supporter

Additional Sponsorship from Keros Therapeutics

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