Welcome to 2021 ASF Family Conference
The Angelman Syndrome Foundation (ASF) held a virtual family conference, welcoming attendees to a week of informative and engaging sessions. The conference was hosted by Amanda Moore, CEO of ASF and mother to a child with Angelman Syndrome. The conference covered updates on the foundation’s work, including the launch of a counselling programme for caregivers, the ASF Family Fund, and a communication bundle to support families. The foundation also highlighted its focus on supporting adults with Angelman Syndrome, with the creation of an adult services task force and the funding of research into symptoms experienced by adults. The foundation is also launching sibling programmes and an insurance support programme. The ASF has invested over $2 million into research since 2018 and continues to fundraise to support its work. The conference also included updates from industry partners on clinical trials for Angelman Syndrome.
Hello everyone, and welcome to the 2021 ASF Virtual Family Conference. We are really sad that we’re not in person with you this year, but we’re really excited to see you next year at the Kalahari Resort in Austin, Texas, on the 1st of August.
For those of you that don’t know, we do have a website specifically for the conference that you can go to, to see the different sessions that are out there, to join them, and to see our sponsors, see our exhibitors, and all that fun stuff.
About the Author
For those of you that don’t know me, my name is Amanda Moore. I have the honour and the pleasure to be the CEO of the Angelman Syndrome Foundation, and I’m also the proud mum of Jackson, who you can see on the screen here, centre, front and centre, with a Heroes Unite shirt, who is six, who is deletion positive.
What’s Happening at the Foundation
I wanted to come on today to talk to you a little bit about what’s happening at the Foundation, things to come, and things that we should all be excited about as a community. When I came on a couple of years ago in this position, what we did was we launched a survey because we wanted to hear from you what we were doing wrong, what we were doing right, what we needed to improve, what we needed to add, and we were just so thankful for the responses we got.
Our Three Pillars
The Angelman Syndrome Foundation really concentrates on three specific areas for the community. One being family support, the other being our clinical network, and the other being investing in research. Those are our three pillars that we live by at the Foundation and what we guide our mission and our work towards every day.
Based on your feedback that we got from the community, from the survey, we have implemented a few new things that we’re really excited about. One is we launched in March a counselling program. We also launched the ASF Family Fund in 2019. We’ve also partnered with Sarah Vard, who is doing an amazing program around communication and how to work with your teams at your school and in other locations on how to support your individual with Angelman Syndrome’s journey with communication.
Clinical Support Network
As some of you know, we moved into a partnership with another 15q-related rare disease, 15q, to expand our research program. The goal of this was to bring more clinicians that really understood the 15q diseases, specifically Angelman syndrome, and increase the access to our families to where we can have clinics within driving distance of all of our families.
Investing in Research
As always, we will continue to invest in research. The Foundation has been investing in research for over 30 years and we’re really proud of the research we have been able to invest in.
I wanted to just say none of this would happen without you. Our community has been unbelievable in raising the dollars and the support to make this happen. We couldn’t do it without you. We couldn’t do it without our WAC coordinators, with our Facebook fundraisers, with our grassroots events, people out there doing chili cook-offs, golf tournaments, corn hole, cocoa for the cure, whatever it may be that they’re out there really pounding the pavement to be able to help us continue to support the families in this way.
There’s a lot you can do. First of all, right now, we’re in the middle of a campaign. We have until August 19th to raise $50,000. You can also join committees. We have so many different committees at the foundation, whether it’s an advocacy committee, which we’re doing in partnership with the Foundation of Angelman Syndrome Therapeutics FAST.
I hope you have a great time and we’ll hopefully see you guys soon next year in person at our live 2022 Family Conference.
- Title: Welcome to 2021 ASF Family Conference
- Author(s): Amanda Moore
- Author(s)’ affiliation: ASF
- Publication date: 2021-08-09
- Collection: 2021 ASF Virtual Family Conference