The Connection of a Tribe

Almost every year for the past 10 years, Patrick and I have attended the Parent Project MD Connect Conference. It is an event where we hear from the scientists and the doctors who are experts in care for boys with DMD and who working on a cure. We have met some of the strongest parents I have ever known. Well since the pandemic we were unable to get together in person but PPMD was able to bring that conference to the community in 2020 and 2021 virtually. It was definitely not the same but it still allowed the pharmaceutical companies to present their findings and we were able to have breakout zoom sessions for moms, dads, and even for the kids.

Connection at these conferences are the most important. I was happy the conference had the mom's virtual social so we could see one another. For the mom's social night this year I invited my friend Lindsay to join me so we could be together and enjoy some connecting with other moms and a few glasses of wine together. Lindsay's son was diagnosed last year so she has not been able to go to conference in person therfore this was a glimpse into what the nights are like connecting in the atrium of the hotel. We were able to connect with moms that I have met before and other moms who have not been to conference yet. All of them are such inspirations. We met one mom who has twins who both have DMD (yes imagine how hard that is), we met moms who go to annual advocacy events on capitol hill and moms whose sons participate in trials to continue to move science forward. What an amazing group of strong women!

When we logged off, Lindsay and I were able to chat for a bit about life with Duchenne. We talked about receiving the diagnosis, about friends we have lost since diagnosis and about finding new ones because of it. It's nice to not only have made a new friend but to have someone close to talk to about life, someone who really knows exactly how I feel because she is in the same boat and literally lives 20 minutes away. We can talk about the "Hulk" that comes out because of DMD behaviors and steroids, we can talk about meds and doctor appointments and about having a community like PPMD and Jett where we can feel safe and included. Having a sense of belonging is so important because this diagnosis can feel so isolating and lonely at times, as I have talked about at length in earlier posts.

Being part of a community is so important to our mental health and so many times it is put aside because there are too many other things that NEED to happen. So I challenge you today to find your tribe and connect with them, even if it has been a while. Schedule a time to get together (literally block your calendar for it). My favorite is to go to dinner but if that isn't possible FaceTime or Zoom with one another because I promise it is worth the effort to make it happen. You and your mental health are worth it!