by Jennifer Egert, PhD, New York City
After being involved with the FSHD Society for more than 10 years, participating in fundraisers, social media, and events, I finally made it to the FSHD Connect meeting in 2018 in Las Vegas.
It’s sort of ridiculous that I hadn’t gone until then, especially when the Society is headquartered in Massachusetts, so close to my home in New York City. I’m not sure what kept me away. The effort of travel. The expense. The feeling that there was nothing to do about this disease, anyway, so why take a weekend talking about it?
Attending the Las Vegas meeting was a game changer
It is quite something to be in a room with so many people who look like you! Though I come from a family of people with FSHD, meeting so many new faces with similar features and bodies immediately gives a sense of community. On the flip side, you also see great diversity in the ways people experience, adapt, and live with the disease. So many conversations gave me ideas about new ways of managing my own mobility issues and new perspectives on coping.
Being able to offer the community my own experience as a psychologist and mindfulness teacher in workshops and breakout sessions was a highlight and inspired me to do more to give back. And simply having drinks or a meal with new friends who understand what living with FSHD is all about, either as caregivers or patients ─ I’m so grateful to have had these moments.
Perhaps the most powerful aspect of attending the FSHD Connect meeting was the inspired energy generated by the FSHD Society staff, the researchers, and patients coming together in a positive, active, purpose-driven way. The enthusiasm researchers had for listening to patients’ experiences, which helped them to understand what outcome measures they need to look at in future research. The sharing of the incredibly exciting time we are in when it comes to developing therapies to treat and cure FSHD. Listening to a panel of eight researchers: four working to arrest disease progression and four studying ways to rebuild muscle. Getting to know the people working to cure this illness and those behind the day-to-day running of the FSHD Society.
These are all such strong impressions that left me hopeful, energized, and excited for what is to come—and with a strong desire to be a part of making the cure happen.
So I hope you come to the 2020 FSHD Connect in Washington, DC. Especially if you are discouraged. Especially if you don’t feel like it will be worth the effort. You won’t regret it.