Meet the FAST Science Ambassadors!
The FAST Science Ambassador program empowers friends and family members of the Angelman syndrome community to understand the science underlying AS in order to effectively communicate and educate across platforms. This program offers talks discussing the fundamentals of AS genetics, research into various therapeutic approaches, and review of the clinical trial landscape as well as opportunities to contribute to the sharing of AS science and serve as educational resources in the community. Knowledge is power, and the mission of this program is to provide a space that bolsters scientific confidence and communication skills, creating Science Ambassadors that will serve as local resources to increase conversations about Angelman syndrome.
As a participant of this program, the science ambassadors hope to:
- Gain confidence in effectively understanding and explaining the complex science of AS.
- Create and optimize communication strategies for various scenarios ranging from playground conversations to fundraising speeches.
- Deep-dive into current research topics and advancements made in the rare disease space and how they impact AS.
Our 2023 Science Ambassadors:
Steve has been a data analyst across multiple industries for six years. Prior to that, he was an agricultural scientist, working to deliver better crops to farmers. Steve and his wife Chen live in Raleigh, North Carolina with their two sons. Their youngest son, Farris, has Angelman syndrome. Steve is working with FAST because they know how to run an R&D pipeline to generate cures and wants to help in any way possible.
I'm a mom of a joyful 2-year-old daughter with AS and her 4 year-old brother and we live in a coastal community in Massachusetts. I've worked as a HR professional most of my career which has helped me tremendously as I've begun to navigate the world of early intervention, specialists and becoming an advocate.
I don't have a background in science and learning the science behind AS and clinical research/treatment is something that has taken time and is still a work in progress. I wanted to become a Science Ambassador because I think I can assist in educating those inside and outside of the community by speaking from a parent perspective and also using terms that are easier to digest.
I'm a freelance journalist based in New York City and often write about design, architecture and the illimitable wonders of parenting a son with Angelman syndrome. Understanding the science is fundamental to any story I may write about Theo's future. There's so much hope in these scientific developments and clinical trials, and I love being able to help bring this information to light for others.
My name is Judit Bodor mum of 2. My daughter, Bianka is 6. My son, Christopher is 2.5 years old living with AS. I knew that he had AS before the genetic testing but doctors disregarded me first.
I would like to be a Science Ambassador covering Ireland and UK because there is not much experience and support especially in Ireland. 90% of healthcare professionals never heard about AS. I did lots of research before I found FAST so I think I’m able to help the community here.
Consultants ask my opinion before they prescribe any medication. London-based geneticists appreciated my knowledge about AS etc. I raised much awareness in radio, newspaper and tv. I also raised funds for rare disease charity in my daughter’s school.
I’m happy to join the community and cannot wait for the cure.
Hi my name is Isabella Scavuzzo and I am a senior at Creighton University graduating in May with my degree in Biology and Spanish. I have always been interested in genetics, and after being a peer mentor in high school to an individual with Angelman syndrome, I knew I wanted to get involved with the AS community. I am a Science Ambassador because I want to help this amazing community, educate as many people as possible about Angelman syndrome, and work towards finding a cure.
My husband and I live in Wisconsin with our four kids, ages 5 and under. Our daughter, Briar (4), was recently diagnosed with Angelman syndrome. Prior to staying home to raise and teach our kids, I was a high school science teacher. I chose to become a Science Ambassador with hopes to help families learn more about the workings of AS so that they feel confident in raising awareness and working towards a cure.
Sonja Winter is passionate about her role as the Chief Marketing and Communications Officer for the biggest healthcare group in South Africa. But her biggest passion are her children Emily (6), and Oliver (nearly 3) who lives with Angelman syndrome. Since Ollie’s diagnosis, Sonja has endeavored to learn as much as possible about his condition in order to provide him with the best future possible. As a Science Ambassador, she looks forward to driving meaningful change by transferring her skills to the community.