Family Gathering Agenda

2021 Virtual FOP Family Gathering, Preliminary Agenda

This is a preliminary agenda and is subject to change. 

Eastern Standard Time (EST)

Greenwich Mean Time (GMT)

Thursday, November 18 

8:00 am EST 13:00 GMT Virtual Pre-Conference Tour: Join Family Services Manager Hope Newport for this live Zoom meeting for a guided tour and helpful tips for navigating the FOP Family Gathering virtual environment. From setting your agenda to match your time zone to turning on translation in general session presentations we'll address key details to set you up for a successful weekend of participation. We will also discuss the role Zoom video conferencing plays in helping our community connect throughout the weekend and point out important things to know about participating in those video meetings!
12:00 pm to 2:00 pm EST 17:00 to 19:00 GMT New Family Pre-Conference:
This program is intended for:
• newly diagnosed families
• families who have recently been connected to the IFOPA and
• first-time Family Gathering attendees
IFOPA staff and FOP community members will welcome families during this pre-event meeting. Participants will gain insight on:
• the role of the IFOPA and an high level overview of it's program and services
• the structure of the FOP Family Gathering and opportunities to engage in learning about clinical care and community support
• how parents, siblings and adults with FOP have navigated their FOP journey
This program will provide one-to-one connections for families who may benefit from having a point of contact for any questions or needs for support that may arise throughout the weekend.
8:00 pm EST             21:00 GMT Virtual Pre-Conference Tour: Join Family Services Manager Hope Newport for this live Zoom meeting for a guided tour and helpful tips for navigating the FOP Family Gathering virtual environment. From setting your agenda to match your time zone to turning on translation in general session presentations we'll address key details to set you up for a successful weekend of participation. We will also discuss the role Zoom video conferencing plays in helping our community connect throughout the weekend and point out important things to know about participating in those video meetings!

 

Eastern Standard Time (EST)

Greenwich Mean Time (GMT)

Friday, November 19 

9:00 to 10:00 am EST 14:00 to 15:00 GMT Dr. Kaplan's Annual Research Update: The man who needs no introduction, Fred Kaplan, MD will share his yearly update on the ongoing efforts to better understand FOP through research initiatives using his insightful metaphor of various ways to fix a leaky faucet depending on the cause and effect of the leak. All questions for Dr. Kaplan will be addressed during the subsequent FOP Medical Experts panel.
10:10 to 11:40 am EST 15:10 to 16:40 GMT Common Health Questions for FOP Medical Experts Panel 1: Drs. Fred Kaplan (US), Ed Hsiao (US), Carmen De Cunto (Argentina) and Chris Scott (South Africa) will come together to share their insight on topics including cardiac complications in FOP, receiving proper follow-up care and how to manage surgery when it's absolutely necessary before turning to the Q&A to answer your questions about care.
12:20 to 1:50 pm EST             17:20 to 18:50 GMT FOP Clinical Trials: Ipsen Biopharmaceuticals, Regeneron Pharmaceuticals and researchers from the STOPFOP trial will share updates on their programs and research initiatives.
2:00 to 3:30 pm EST 19:00 to 20:30 GMT FOP Clinical Trials 2: Incyte Corporation, BioCryst Pharmaceuticals and Daiichi Sankyo will share updates on their programs and research initiatives.
3:40 to 5:10 pm EST 20:40 to 22:10 GMT

Small Group Discussions **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) 
  • Teens with FOP (ages 13-17) 
  • Spouses with Significant others of Individual with FOP
  • Siblings of Individuals with FOP
  • Extended Family and Support Network of Individuals with FOP
  • Bereaved Family Members of Individuals with FOP 

*Additional languages specific small group discussion sessions will be hosted in collaboration with leaders from national organizations and at times convenient for those participants on Friday afternoon/evening or Saturday morning

5:00 to 7:00 pm EST 22:00 to 24:00 GMT Exhibit Hall Open and Time to Connect in the Lounge 
7:00 pm EST 24:00 GMT Community Social Events (Click here to learn more and sign up to participate!)

 

Eastern Standard Time (EST)

Greenwich Mean Time (GMT)

Saturday, November 20

6:00 to 8:00 am EST 11:00 to 13:00 GMT  Community Social Events and Self Care Activity (Click here to learn more and sign up to participate!)
8:10 to 9:40 am EST 13:10 to 14:40 GMT Common Health Questions for FOP Medical Experts Panel 2: Drs. Mona Al Mukaddam (US), Robert Pignolo (US), Genevieve Baujat (France) and Richard Keen (United Kingdom) 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.
9:40 to 11:00 am EST             14:40 to 16:00 GMT Exhibit Hall Open
Concurrent Sessions 
11:00 am to 12:00 pm EST 16:00 to 17:30 GMT 

Comfort, Care and FOP

11:00 am to 12:30 pm EST 16:00 to 17:30 GMT Dental Care and Anesthesia Experts Panel: Drs. Clive Friedman (Canada), Zvi Grunwald (US and Israel), Chris Scott (South Africa) and Janieke Van Nugteren (South Africa) will come together to share their recent experience supporting a adult individual with FOP who recently underwent dental surgery in South Africa. This team of oral health, anesthesia, and medical experts from around the globe will share how they collaborated with a patient and local providers to provide optimal care. 
11:00 am to 12:30 pm EST 16:00 to 17:30 GMT IFOPA Research Update and Participating in the FOP Registry: IFOPA Research Development & Partnerships Director, Danielle Kerkovich, PhD and IFOPA Executive Director Michelle Davis will share about the variety of ways the IFOPA supports FOP research.
Concurrent Sessions 
12:40 to 2:10 pm EST 17:40 to 19:10 GMT

Living Well with FOP and the Ability Toolbox Program: 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 to 1:40 pm EST 17:40 to 18:40 GMT Managing Stress and Focusing on Outlook: Gloria McCahill, Energy Medicine Practitioner/Teacher, and Luciana Wulkan, FOP Community Member, will explore their experiences of the impact  stress has on the body and FOP fallout. They will discuss how one's outlook, environment and simple techniques to improve energy flow can become valuable resources and tools to combating stress and turn challenges into building blocks to learning rather than roadblocks to life. 
12:40 to 2:10 pm EST 17:40 to 19:10 GMT

FOP Observational Study Updates

FOP Prevalence Study: Dr. Bob Pignolo (US) will present on behalf of the IFOPA to share insight on how the study was conducted, what the findings were and what they mean for the FOP community. 

Ipsen Burden of Illness Survey: Dr. Mona Al Mukaddam (US) will present on behalf of Ipsen Biopharmaceuticals to share select findings from the recent Burden of Illness Study which was completed by the international FOP community earlier this year. 

2:50 to 4:20 pm EST 19:50 to 21:20 GMT

Small Group Discussions:

  • Empowering Young Adults with FOP: Only Open to Young Adults with FOP, a safe and supportive space to experience the connection that exists in the FOP community and have the opportunity to bond with others in their age group.
  • Pursuing a Career and Following Your Passion: Join in the discussion and learn from individuals pursuing a variety of career paths. They'll share the considerations they weighed and the factors that have been key to their current career decisions.
  • Medicaid and Waiver Programs: Applicable for US Families Only, hear from two members of the FOP community who share their insight navigating the Medicaid and waiver programs. 

Workshop:

  • The Road Less Travelled: Life with FOP and Beyond: Open only to English speaking caregivers of individuals with FOP, Stayed tuned for more information about this workshop on: recognizing and using the experience of uncertainty, and of travelling an untrod path as a means of growth and building inner strength through the challenges of your life. transforming the experience of FOP into acknowledgment of our universal "uniqueness' as human beings and using personal experiences as a catalyst for emotional, creative and spiritual growth and finding and building bonds with others through our shared FOP experience and learning to translate that into a larger bond
4:20 to 6:00 pm EST 21:20 to 23:00 GMT

Exhibit Hall Open and Time to Connect in the Lounge

7:00 pm EST 24:00 GMT

Community Social Events (Click here to learn more and sign up to participate!)

 

Eastern Standard Time (EST)

Greenwich Mean Time (GMT)

Sunday, November 21 

8:00 to 9:00 am EST 13:00 to 14:00 GMT Self-care Activity (Click here to learn more and sign up to participate!)
10:00 am to 11:30 am EST 15:00 to 16:30 GMT

Small Group Discussions:

  • The Rhythms and Routines That Simplify Our Lives (click here to see the promo video for this session!): This workshop will feature videos and discussion to spark ideas on how to make life with FOP more manageable. If you are a fan of the Ability Toolbox program, you’ll love this second program hosted by members of the community that focuses on home and activity adaptations. Think of it as “a day in the life” of people with FOP and an opportunity for us to learn from each other. As we know, life with FOP is rarely simple, but it’s definitely easier when we travel the road together. 
  • Growing and Advocating with FOP: Life with FOP is full of learning opportunities, join several members of the community as they share their experience growing as a person and and advocate in their FOP journey.

Workshop:

  • The Road Less Travelled: Life with FOP and Beyond: Open only to English speaking caregivers of individuals with FOP, Stayed tuned for more information about this workshop on: recognizing and using the experience of uncertainty, and of travelling an untrod path as a means of growth and building inner strength through the challenges of your life. transforming the experience of FOP into acknowledgment of our universal "uniqueness' as human beings and using personal experiences as a catalyst for emotional, creative and spiritual growth and finding and building bonds with others through our shared FOP experience and learning to translate that into a larger bond
11:40 to 12:20 pm EST             16:40 to 17:20 GMT

Patient and Family Involvement in the Drug Development and Approval Process: Returning speaker and supporter of the FOP community, Kendall Davis joins us again this year to share her expertise and help prepare families for the road ahead in clinical trial and drug development involvement. She'll be sharing some valuable insight on how these dynamics can shift should there be an approved treatment for FOP in the future.

12:30 to 1:15 pm EST 17:30 to 18:15 GMT 

IFOPA Family Services: Connecting and Supporting Families: IFOPA Family Service team Hope Newport, CCLS and Karen Kirchhoff MSPT share a glimpse into the many ways they connect with the FOP community to help provide and facilitate support for individuals with FOP and their support system throughout their FOP journey. 

2:00 to 3:00 pm EST 19:00 to 20:00 GMT

Friend raising and Fundraising to Help #cureFOP: Cathryn Roys, Community Fundraising Manager will be joined by FOP community members Suzanne Hollywood, Christina Porter, Joey Suchanek and Kim Hanf as they share their experience fundraising in ways begin and small starting from just after diagnosis to 30+ year into their FOP journey. 

3:10 to 3:30 pm EST 20:10 to 21:30 GMT

Closing Ceremony: Join IFOPA staff and FOP community members for this "Group Photo" opportunity, the chance to say see you later and a sneak peak at what we're looking forward to in 2022!

 

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