Lauren Perry is a SYNGAP1 Mom to Will and is SRF’s Operations Manager
In the very earliest days of SRF, I wasn’t on the inside, but I do remember it well when I first heard about Ashley and Mike and their recently-diagnosed son Tony. Seems like one day all of the sudden BAM! I started seeing Syngap posts on Facebook from this random guy named Mike. He seemed like he really knew what he was talking about.
I remember specifically seeing a post with a photo of an adorable little boy drinking whipped cream because he was on the keto diet. I thought, man, I need to start following this random guy and see what they are doing.
Then I saw SynGAP Research Fund, the organization, had been formed, and all my beloved community members were already in the know. I wondered what I had been missing! Well, it didn’t take long and I was suddenly seeing blog posts and webinars and really meaningful conversations happening about the future and science and research and it all was so impressive.
Soon I was invited to be a regional ambassador for Colorado and surrounding states. I remember conference calls with Virginie and all the planning that was going on. The first thing I told her was as long as I don’t have to do any public speaking, I’ll do it. SRF was doing so much right from the get-go.
To be honest, though, after being hired in May 2021, I’ve gotten a much deeper understanding of what SRF does and how much really goes into it everyday by the volunteers, family members, fundraisers, and especially Mike & Ashley. They sacrifice a lot and always keep their eyes on the goal to cure SYNGAP1.
I love SRF and just know everything we are doing is helping. I’ve said it before, but at the end of a day’s work, I always feel hopeful about our kids’ futures.
Happy 5th birthday to SynGAP Research Fund!