Agenda 2023 In-Person Family Gathering - IFOPA - International Fibrodysplasia Ossificans Progressiva Association

Agenda 2023 In-Person Family Gathering

Click here for the virtual meeting agenda

Thursday, November 16
10:00 am to 4:00 pm	Pre-Conference Workshop for Adult Siblings of Individuals with FOP
	English-speakingIn-Person Attendees	Spanish-speaking In-Person Attendees
4:30 pm to 6:00 pm	Fun Zone Meet and Greet	Fun Zone Meet and Greet
7:00 pm	Welcome Dinner Welcome to the 2023 FOP Family Gathering Session begins at 7:30 pm
Friday, November 17
9:00 to 9:05	Welcome and Opening Remarks
9:05 to 9:45	Progress in FOP: From the Bench to the Bedside
9:45 to 11:00 am	Insights from FOP Medical Experts and Questions from the Community
11:00 to 11:30 am	Break and Time to Connect
11:30 am to 12:45 pm	Clinical Trials for the FOP Community
12:45 to 2:00 pm	Lunch
	English-speakingIn-Person Attendees	Spanish-speaking In-Person Attendees
2:00 to 3:30	Small-group discussions by personas with icebreaker activities	Small group discussion for spanish-speaking attendees
3:30 to 4:00 pm	Break and Time to Connect
4:00-5:30 pm	Community activity stations: Meet the Researchers: An interactive lab tour with Q&A from researchers at UT Southwestern Sensory Self-care Stations: Enjoy a hands on opportunity to explore ways to incorporate self-care through your 5 senses! *Parent Talk:* Join a discussion with Dr. Al Freedman, counseling psychologist, bereaved rare dad and leader of the monthly Peer Support Group for adults with FOP. Creative Expression Project: Show your artistic side as you decorate a paper leaf to be added to our FOP community tree of strength! Help us all remember how powerful we are when we come together!	Community activity stations: Meet the Researchers: An interactive lab tour with Q&A from researchers at UT Southwestern Sensory Self-care Stations: Enjoy a hands on opportunity to explore ways to incorporate self-care through your 5 senses! Creative Expression Project: Show your artistic side as you decorate a paper leaf to be added to our FOP community tree of strength! Help us all remember how powerful we are when we come together!
6:30 pm	Evening Dinner and Music	Evening dinner and music
Saturday, November 18
9:00 to 9:10 am	Welcome Back and Recap of Day 1
9:10 to 10:25 am	Safety and FOP
10:25 to 10:55 am	Break and Time to Connect
10:55 am to 12:10 pm	Symptom Management Strategies for FOP
12:10 to 1:10 pm	Lunch
	English-speakingIn-Person Attendees	Spanish-speaking In-Person Attendees
1:10 to 2:40 pm	Rotating stations: Nutrition and FOP Homemade Tools and Problem Solving Technology as a Tool/Meet and Greet with FOP Community Fundraisers	Rotating stations: Homemade Tools and Problem Solving Nutrition and FOP Home adaptions and comfort
2:40 to 3:00 pm	Break and Time to Connect
3:00 to 4:00 pm	Closing Session: FOP Community Perspectives
4:00 to 5:00 pm	Laughing Lovebugs Yoga Session:Enjoy the benefits of deep breathing and endorphins as you laugh your way through this session.
6:30 pm	Movie and Dinner (optional for those who remain on-site)

Ancillary Activities

In addition to the general session, workshop and social event schedule included below the following activities will be taking place throughout the weekend:

Fun Zone and Teen Zone
Ask a Doctor and Ask a Dentist Meetings
FOP Biobank Donation Opportunity
Ability Toolbox Tool Display

Do you like this page?

Learn More

Is it FOP? Just Diagnosed Registry

Make a Difference

Donate Connect Fundraise

Already a Member? Sign In

Sign Up for FOP Connection, Our Monthly eNewsletter