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Dr. Deardorff: Thoughts on the Family Meeting

Updated: Dec 19, 2022

I must admit, this is the first piece I’ve ever written for a blog. In general, I’ve tended to stay away social media and blogging. But the family meeting we had in July in Philly was pretty special. After we first identified WDR26 changes in several children, we had a small three family gathering back in 2016. It was amazing to get a good feel for how friendly and engaging these kids are. After having another gathering in 2018, where 8 families came and we met additional families virtually, we began planning for another in 2020…and like many other events over the past two years, it took much longer to get back together than planned!

But, over the past four years, we kept thinking about the children with WDR26 changes, and met lots more families online. And in the interim, Katie Grand and I had both moved to other positions away from Philly. So, getting things organized and in place, while seemed easy months before, became a bit more hectic as the end of July approached. We did a bit of last-minute scrambling with COVID sidelining some of our team, but Cara [Dr. Skraban that is], made it all come together!

We always tell families, and I’m not sure they really believe it, but as clinicians and researchers, many of our insights come from meeting children and their families. This year was no different. We met families individually for a day before the meeting, let them hear what we knew and didn’t know about WDR26-related findings and what we thought were important future directions. And we also made a number of new clinical observations about these pretty special kids. However, one thread that continued to come up as we talked with families was the appreciation that many of them had for music and dancing!

Fast forward a day to our informal scientific and clinical conference. In addition to a couple of us on our team presenting what we knew, we had the good fortune to have a couple additional speakers (Drs. Song, Wilde, and Frazier) give very insightful talks on how to better understand the effects of WDR26 changes. I’ve been to lots of scientific conferences and have even planned a few. But we took a slightly different approach for this meeting. We wanted the families, who have had the most investment in understanding WDR26, to be integrated in the conference. We also had noticed that the kids, for the most part, were very engageable. So, rather than relegating them to an adjoining room, which would also pull many parents out of the discussion, we took the gamble to set the room up so both parents and kids could attend. What happened was phenomenal. Although many of these kids have difficulty speaking, most of them paid lots of attention to the talks. And several even pulled their chairs up beside the speakers to get closer to the action! And to top that, when one child requested that some dance music be played during a break, many of the other kids, and then families joined in and our subsequent breaks turned into “dance breaks”! What I would give to have “dance breaks” at our national genetics meetings! So, while there will be a lot of work to keep the momentum going from this meeting over the next couple years, I can’t wait to get back to the conference and the dance sessions!

Matt [Dr. Deardorff in my day job]

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I am so thankful for what you have done for us families. We are go grateful that you, Cara and Katie are so kind, warm and thoughtful towards us all. The family meeting meant the world to us and thank you from the bottom of my heart.

I also admit that I was a little nervous about a long day of talks but as you acknowledged, the kiddos seemed to be engaged and interesting in who was speaking. And adding the dance party in between speakers made the day MAGIC!

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