Greenwich Mean Time (GMT)

Thursday, November 18 

Greenwich Mean Time (GMT)

Friday, November 19 

These sessions are CLOSED TO BIOTECH, PHARMA, RESEARCHERS and ALL CORPORATE ENTITIES.

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) 
• 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  

Small Group Discussions by Language:

• Spanishing Speaking Community Members
• Portuguese Speaking Community Members

Greenwich Mean Time (GMT)

Saturday, November 20

Comfort, Care and FOP: FOP Community member Nancy Sando, occupational therapist Karyn Dunlap and caregiver Nicole Eaton share their experience using lymphatic massage as an effective method for promoting comfort and care in FOP disease management.

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.

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. 

Comfort Break and Time to Connect in the Lounge

Small Group Discussions:

• Empowering Young Adults with FOP: Only Open to English-Speaking 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 an 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

Exhibit Hall Open to Chat with IFOPA Staff

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

Greenwich Mean Time (GMT)

Sunday, November 21 

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 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

Patient and Family Involvement in the Drug Development and Approval Process: Laura Iliescu, Associate Director of Patient Advocacy Strategy joins the FOP community to talk about patient involvement in the clinical trial and drug approval process. She'll also be focusing on what to consider when deciding if and what clinical trial is right for you.

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. 

Friend raising and Fundraising to Help cure FOP: 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. 

Closing Ceremony: Join IFOPA staff and FOP community members for this "Group Photo" opportunity, the chance to say see you later and a find out which attendees came out on top on score board for 2021 FOP Family Gathering game badge points!