January 2023 Fireside Chat Q&A
When I joined the team as the president of FAST, I told everyone that I wanted the community to know the staff and be able to reach out to them on an individual basis. On January 8th, I was excited to sit down with two new staffers, director of community engagement, Meghan Edberg, M.Ed, and science director, Nycole Copping, PhD. Some of the highlights are below and please do not hesitate to reach out to them moving forward!
Meghan, can you describe your career leading up to joining FAST?
A: Sure! I started in psychology with the goal of going into sport psychology out of high school. As many of us in this room know, life can throw unexpected lemons at you, which it did for me. I took those lemons and made lemonade each time resulting in the opportunity for me to work with some really diverse populations in a variety of industries! I believe all of that happened for a reason as this role at FAST brings all of my skills together and I’m so grateful to be here!
Nycole, how did your career path lead you to Angelman syndrome and FAST?
A: I started my career in autism research working with Dr. Jacqueline Crawley then transitioned to Angelman syndrome and completed my graduate and postdoctoral work focusing on preclinical translational modeling with Dr. Jill Silverman. When this position became available in FAST I was so excited to join to be involved with all the ongoing research projects! A lot of times there can be a disconnect between the science and the community and it was after I attended my first FAST summit in 2016, after 14 hours of science presentations after traveling all night, I received a hug from an individual with Angelman syndrome--that was the turning point in my career. This moment of understanding of why we are all here - why this is so important and where I knew I wanted to continue working with AS and FAST.
Meghan, what do you plan on building here at FAST in your new role?
A: My goals are to help families by guiding them or assisting with creating resources they need to support the mission of the organization. I hope to launch new programs that can connect families to each other and to our mission. I really want us to be an engaged, informed, and empowered community!
More specifically, I want to revamp existing programs like FAST Athletes, hear from the community on what common interests will unite us beyond Angelman syndrome, and one day soon, have regional representation across the US and beyond.
Can you say more about regional representation?
A: This is a pie-in-the sky idea that I hope becomes a reality. I would love getting families connected regionally or by state with the goal to provide more support at the local level which can have positive downstream impacts to our state advocacy efforts and fundraising.
Nycole, what are you most excited about when you see FAST’s pipeline of therapeutic programs?
A: I am excited about all the ongoing projects! Particularly, I think the HSC work being done at UC Davis is promising and the work Drs. Wilson and Jiang are doing. I am obviously more familiar with the HSC work, so I am excited to jump in and understand more about all the other research happening.
Nycole, if families have an idea for research, can we bring them to you?
A: Yes! Families’ voices are very important for determining pre-clinical research strategies. For example, after having a talk with Allyson a while back she mentioned a task where Quincy had to remove an object stuck on her forehead. We then took that information and devised a similar task in our preclinical models where a sticky dot had to be removed by the animal. These types of tasks are so useful when driven by parent/caretaker information!
Nycole, what information can the community reach out to you for?
A: I can best serve the community answering questions on any of the 4 pillars of our roadmap, general science questions, and pre-clinical / basic research. I do not have deep knowledge about clinical trials yet, but am hoping to learn more in the future. I want to be the bridge between science and the community so I look forward to being a resource for anyone in the community!
Meghan, you mentioned you are into sports, which one do you play?
A: I played softball growing up! Kindergarten through college. Now I’m into running and attempting golf.
Nycole, you mentioned in your intro that you love to travel, what is your favorite destination?
A: Ireland--nothing specific. I love the whole country!