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About FAST

Meet Amelia Beatty

Meet Amelia Beatty

How were you first introduced to FAST? Do you remember the first time you understood that there was hope for a cure? Tell us about it.

  • The day after my son Orion was diagnosed with Angelman syndrome in 2016 a friend introduced me to FAST. She told me that FAST is the organization investing in research and accelerating the Angelman syndrome therapeutic pipeline. So, two months after Orion's diagnosis, my husband and I found ourselves at the FAST science summit. Researchers and scientists told us that there would most certainly be a treatment and eventual cure for the disorder and it was clear to us that FAST is the leader in making that happen. That gave me so much hope and I knew in that moment I absolutely wanted to be a part of the work that FAST is doing to bring effective therapeutics to my son and all to people living with Angelman syndrome.

What moment in your AS journey did you realize you wanted to take on a bigger role?

  • After I got off the phone with the Angelman mom who told me about FAST, I knew I couldn't just feel sorry for my son and his diagnosis and do nothing. I knew I needed to make a positive difference. I jumped right in to FAST's Cure Angelman Now (CAN) community fundraising campaign, raising critical funds to support FAST's mission to cure Angelman syndrome. Every year since then Orion has been a top CAN fundraiser! In addition to fundraising, I have also been very intentional about building community, both locally (wherever I'm living) and within the broader world-wide Angelman community. It's so important to know that you are not alone in this AS journey AND that there are so many reasons to have hope for a brighter future for our loved ones living with Angelman syndrome, thanks to the work that FAST is doing!

What is your favorite part of being on the FAST board?

  • In 2020 I was given the incredible opportunity to join the FAST Board of Directors. My favorite part of being on the FAST board has been to develop our FAST Global team. I am American but have lived much of my life outside of the US- in Asia, Africa, Europe and the Middle East. I understand how important different perspectives are and how richly blessed a company/organization/community/family can be when it welcomes people from all backgrounds. Seeing FAST expand to be a truly international foundation, with FAST Global chapters all over the world, makes me feel like my work on the board has made a real difference.

Why do you have hope for the future of AS?

  • From my perch on the board I am watching FAST-funded research turn into experimental drugs and experimental drugs turn into clinical trials. Some of these clinical trials WILL turn into FDA-approved treatments. The therapeutic pipeline has expanded enormously since my first science summit in 2016, and continues to expand. We Dream Big, and it is paying off!

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