It takes a village, and a vineyard!
community-voices-blog

Meghan Edberg | March 28, 2022

Hi FAST Community!

This last weekend, I had the privilege to travel to Northern California to tour the UC Davis Labs and local vineyards with other AS families and the FAST Board. We spent one day seeing the science with our own eyes and all the complexities that go into the cure for our loved ones. I’m sure there are varying levels of interest and understanding when it comes to the science behind a cure for Angelman syndrome. As an AS momma who knows enough to be a little dangerous yet easily gets lost when the scientific jargon starts to get beyond me (which doesn’t take much), I’d explain things like this:

  • We as a community have funded a “Disneyworld” for AS science to take place. With multiple labs and areas of expertise on one campus, it allows science to collaborate and move so much faster than being siloed across the country. Therefore, we got to see the stages of science to get from “Bench to Bedside.”  It was incredible to see the scientific equipment, staff, and resources needed for it all to come alive.
  • The scientists were loud and clear that our AS community is by far the front-runner for rare diseases and it’s because of us, we have gotten to where we are today. Yay us!
  • As parents and even the board, we were so excited and grateful to see the science IRL (in real life). What surprised me was how grateful and excited the scientists were that we WANTED to see their labs and were so thankful we came to visit.  It is rare that scientists can spend time with the families of the disease they are trying to cure!

On the other day, we spent time with each other while tasting Napa’s finest. We got to know each other as humans, talked about our AS kiddos and experiences, and how we do our individual parts to support FAST towards a cure. I learned so much from everyone and left the weekend feeling charged up and motivated to #KickAS!  

It takes a village (Families, FAST, Science) and a vineyard (being together to support each other, learn from each other, and celebrate us living the AS life)!

We had our fun, now it’s time to work!

#ChopChop – We are called FAST for a reason!

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