Event Agenda

Pre-Event Community Building and Orientation Activities

To see the times below in your time zone for these dates, visit World Time Buddy. 

Monday, October 3, (Starting at 7 pm ET) Click here to join!

Attendee Meet and Greet & IFOPA Program TriviaWe'll be kicking off Family Gathering week with a rousing game of trivia. Join the staff of the IFOPA as we break into teams to battle for the title of trivia champion. This is an opportunity for attendees to meet and interact in a fun, casual space before the event takes off later in the week.

Tuesday, October 4 (Starting at 11 am ET) Click here to join!

Attendee Meet and Greet & IFOPA Program TriviaWe'll be kicking off Family Gathering week with a rousing game of trivia. Join the staff of the IFOPA as we break into teams to battle for the title of trivia champion. This is an opportunity for attendees to meet and interact in a fun, casual space before the event takes off later in the week.

Wednesday, October 5 (Starting at 11 am ET) Click here to join!

Wednesday, October 5 (Starting at 7 pm ET) Click here to join!

Meet the FOP Family Gathering SponsorsMeet the leaders from the pharmaceutical industry sponsors who are working to find a treatment in the FOP community. Presenters will introduce you to their company, share about their work outside of the clinical trial space and answer your questions. Please note, the FOP Clinical Trials session is scheduled for Saturday, Oct. 8 and all clinical trial questions will be answered at that time.

Thursday, October 6  (Starting at 7 pm ET) Click here to join!

Ready, Set, Success: A Family Gathering How-ToDon't miss this helpful session on how to do the 2022 FOP Family Gathering. From important agenda highlights you won't want to miss to simple navigational tips this event is a must for anyone who wants to know their way around before the weekend starts!   

Friday, October 7 (Starting at 11 am ET) Click here to join!

Ready, Set, Success: A Family Gathering How-To: Don't miss this helpful session on how to do the 2022 FOP Family Gathering. From important agenda highlights you won't want to miss to simple navigational tips this event is a must for anyone who wants to know their way around before the weekend starts!

Start of the 2022 FOP Family Gathering

Saturday, October 8

9:00 am ET: The Twilight Zone: Benefit, Risk & Hope in Clinical Trials for FOP: Dr. Fred Kaplan presents his annual research update where he'll discuss benefit, risk and hope in clinical trials for FOP. Professional translation is available in Spanish and Portuguese.

10:00 am ET: Common Health Questions for FOP Medical Experts Panel 1: Drs. Fred Kaplan (US), Ed Hsiao (US), Zvi Grunwald (US) and Patricia Delai (Brazil) will come together to share their insight on aspects of FOP care including COVID, complications of drug use on skin health and anesthesia before turning to the Q&A to answer your questions about care. Professional translation is available in Spanish.

12:20 pm ET: FOP Clinical Trials and Studies, Part 1: Ipsen Biopharmaceuticals, Regeneron Pharmaceuticals and researchers from the STOPFOP trial will share updates on their programs and research initiatives. Professional translation is available in Spanish and Portuguese.

2:00 pm ET: FOP Clinical Trials, Part 2: Incyte Corporation and BioCryst Pharmaceuticals will share updates on their programs and research initiatives.

3:00 pm ET: Self-care Session: Self-care and Resilience: The uncertainty of life causes our brain to release stress hormones, which affect our mood and physical health. Recognizing this and taking steps to relax the body and clear the mind, are key to building resilience, the ability to bounce back from challenges. Sponsored by Regeneron Pharmaceuticals

4:00 pm ET: FOP Family Small-group Discussions 

  • Spanish-speaking attendees
  • Portuguese-speaking attendees

     **The following sessions are intended for English-speaking participants.

  • Mothers of Individuals with FOP
  • Fathers of Individuals with FOP
  • Adult Men with FOP (ages 18 and over)
  • Adult Women with FOP (ages 18 and over)
  • Spouses and Significant others of individuals with FOP
  • Siblings of Individuals with FOP
  • Bereaved Family Members of Individuals with FOP

6:00 pm ET: Community Chats hosted on CVENT Discussion Forums Sponsored by Ipsen and Regeneron Pharmaceuticals: 

  • Wheelchair Safety and Precautions
  • Advocating for Yourself and Your Loved One with FOP

7:00 pm ET: Community Social Events 

  • Smoothie Solutions
  • Family Friendly Team Jeopardy
  • Online Escape Room: Clue Kingdom: The Enchanted Forest

Sunday, October 9

6:00 am ET: Community Social Event: Family Friendly Team Jeopardy

8:10 am ET: Common Health Questions for FOP Medical Experts Panel 2: Drs. Mona Al Mukaddam (US), Robert Pignolo (US), Vrisha Madhuri (India) and Ben Whitehead (Australia) will come together to share their insight on topics including uterine Fibroids, acute and chronic pain in children, and scoliosis before turning to the Q&A to answer your questions about care.

9:50 am ET: Self-care Session: Navigating Life – the Hawaiian Way. Finding your way in life is sometimes challenging. Ancient Polynesian navigational tools can provide guidance for today’s wayfinding. Whether you are in a calm or turbulent time in your life, these ancient skills can help direct you. Join us in the practical application of Ancient Hawaiian wisdom to navigate your life with compassion, harmony and flexibility. Activate your inner compass, explore your connection to all of life, and identify the joy of being clear about where you are headed and why. Sponsored by Regeneron Pharmaceuticals

Concurrent Sessions 

11:00 am ET: FOP Oral Health Implications and Treatment Approaches: It has been shown that 70% of FOP patients experience at some point a (very) limited maximum mouth opening (MMO) due to heterotopic ossification of the temporomandibular joint (TMJ) and surrounding structures of the maxillofacial region. The decrease in MMO has far reaching consequences for the quality of life of FOP patients. Mouth opening in FOP patients can gradually decrease with serious consequences for eating, oral hygiene and dental treatment. The results presenter Ton Shoenmakers review on the causes and locations of heterotopic ossification in the maxillofacial region and the TMJ will be presented in this session including proposed recommendations for the oral care of patients with FOP. Professional translation is available in Spanish.

11:00 am ET: FOP and Caring for the Nose, Jaw and Throat: Join four members of the FOP Care team in the Netherlands as they discuss a case study of an FOP patient who is experiencing problems with pain when chewing, nosebleeds and swallowing complications. Learn how they work together to diagnose and treat issues related to the nose, jaw and throat related to bone formation.

Concurrent Sessions:

12:40 pm ET: Tools and Adaptations for Independence While Living with FOP: FOP community representatives and Family Services Coordinator Karen Kirchhoff, MSPT will discuss how you can use tools in a variety of ways to support continued independence, boost confidence and promote a balance for caregivers.

12:40 pm ET: Connecting for Care: How to Organize Support in the Complex World of FOP Care: The rarety of FOP and the large number of specialists involved in an individual's care can be difficult to manage. That's before adding the complexity of navigating health insurance to access optimal care. This session will feature the insight of a complex care social worker who assists families with these issues every day, the insight of an FOP family working with a complex care department, and the insight of a health literacy advocate who encourages people to become more empowered in discussion with their medical team by understanding their language.

12:40 pm ET: IFOPA Research and Registry Update: Hear the latest updates on IFOPA research support initiatives and how you can contribute to FOP research through those programs. 

3:00 pm ET: Topic Specific Small-group Discussions

• Advocacy, College and Seeking and Maintaining Employment lead by Laura Rossano
• Adaptive Tool Show and Tell with Thomas Jefferson WILL Project Collaborators
• Unseen (Caregiver Documentary Film) Screening and discussion

6:00 pm ET: Community Chats hosted on CVENT Discussion Forums Sponsored by Ipsen and Regeneron Pharmaceuticals:

  • Maintaining Social Connections
  • LIVE Survey/Feedback Opportunity

7:00 pm ET: Share Your Strength Talent Show

SPONSORSHIP & ACKNOWLEDGEMENTS

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