Hola FAmilia 👋🏽 my name is Mary-Beth. At this year’s FAdult Meeting in Chicago, we did something special one day. I took over FARF’s Facebook on the first day of the FAdult Meeting to share a little behind the scenes action! Here are some of the highlights.
A little about me: I’m 27, and was diagnosed with FA as a toddler. So far, I’ve not had any major complications and I’m immensely grateful for that. I’m also grateful that when that day comes, FARF is doing everything they can so that I have access to the best treatment protocols.
Standing here in my White Sox shirt in beautiful Chicago today, I can’t (admittedly cheesily) help but think of that line in Field of Dreams: if you build it they will come.
Well, you’ve built it—at great cost and with the grit of your grief. You’ve fundraised, researched, provided care for, and loved individuals with FA, and the result is 59 adults here—surviving and thriving with what was believed to be a childhood disease as we were growing up. We’re here in Chicago for a few days to soak in information and the fullness of being together in community. Thanks for building this for us. Please keep building. We desperately want to grow old and to see more and more faces join us each year.
To kick things off, we played the Wall-to-Wall game, where one of our FAdult council co-chairs, Matt Pearl, led our group in answering questions like:
Are you from the US or abroad?
Is this your first meeting?
Have you had a transplant or not?
Are you an introvert or extrovert (check the ambiverts in the middle 😂)?
Do you have or FA or love someone with FA?
It was beautiful to watch our adults with FA and their partners, parents, caretakers, and kids (!) move from wall to wall, to represent the shared experiences within our community.
While our experiences vary, there’s also a beautiful shared connection in identifying a room full of people who GET IT. That connection is what brings us back every year!
What do eggs, chickens, dinosaurs, humans, and superheroes have in common? I’m not really sure, but these Rock Paper Scissors battles were really fun to watch! We try to have as much fun as we get good information at the FAdult meeting.
Dr. Stella Davies led a fun, informational game of “Fanconi Anemia Jeopardy”, where audience members got to be contestants and show what we know about FA, FARF, and even some Chicago trivia.
Ralf allowed me to take a quick picture of him right before he took a video of my mouth for his research study, Reducing the Burden of Squamous Cell Carcinoma in Fanconi Anemia. It’s an easy study to be a part of since he’s always at the meetings, AND there’s always German chocolate at the end. Data for chocolate is always a fair trade in my book!
One of the important aspects of planning a meeting for adults with FA, is making sure the information is relevant to the issues adults are facing now. We had an extremely informative session about integrative health, discussing issues around the connection around our minds, bodies, and the every day steps we can take to be well.
Then, we transitioned into group, where we were able to process and discuss shared experiences, questions, and information that might be helpful for each other.
As we get older and older in this generation of adults, I’m increasingly thankful that FARF is growing up with us, and providing spaces for us to discuss our needs as adults. Younger generations: we can’t wait to have you join us! I can’t wait for what we’re learning along the way to be refined and passed down to help new cohorts of adults.
Thank you for following along with me! I hope to see you at the 2020 Meeting for Adults with FA in Austin!