2023 ASF Virtual Conference – Intro
The 2023 ASF Virtual Conference is designed to be inclusive and accessible, with recordings available for attendees to review at their convenience. The conference features a range of speakers discussing Angelman Syndrome, a genetic disorder affecting the nervous system. The Angelman Syndrome Foundation (ASF) has had a successful year, launching the LADDER Learning Network, opening four new ASF clinics, funding multiple research proposals, and establishing the Jacob Pritzker Fellowship Program. The ASF also hosted its largest family conference ever, launched a podcast, and established strategic partnerships to provide free genetic testing and medication access. The ASF has funded nearly $15 million in research since 1996 and continues to expand its clinic network. The ASF also offers a counselling program and a Family Champion program. The ASF is transparent about its spending, with the majority of funds going towards programs, services, research, and clinics. The ASF is also working on new initiatives, including a referral program, adult service workgroup, service provider training, and a web-based AAC program. The next family conference will be in 2024.
Welcome to the 2023 ASF Virtual Conference
Hello and welcome to the 2023 virtual conference. We’re thrilled that you’re joining us. We’ve made this conference more inclusive so you can view it at your convenience, as we understand how busy everyone is. We’ve made all the recordings available for you to review and listen to, to support your journey with caring for a loved one with Angelman Syndrome. We hope you enjoy all the speakers we have lined up for you.
We’ve had an incredible year at the Angelman Syndrome Foundation, thanks to your support and trust. We’ve been able to create programming, medical support, and research to support you and your loved one on this journey. Here are some of the things we’ve accomplished in the past year:
- Launched our LADDER Learning Network, a network of clinics across the world focusing on the medical and clinical care of our loved ones with Angelman syndrome.
- Opened four new ASF clinics.
- Funded seven different research proposals in 2022, and four more recently.
- Established the Jacob Pritzker Fellowship Program.
- Hosted the biggest family conference ever.
- Launched the ASF podcast.
- Established partnerships with Ambient Care and the Pan Foundation.
- Helped close to 235 families since 2022 with the Family Fund dollars.
- Raised about $1.2 million to fund our projects at the Foundation.
Our Future Plans
We have several exciting plans for the future:
- We’re looking at possible clinic sites in Cincinnati, Children’s Hospital of Pennsylvania, Utah, Seattle, and Arizona.
- We’re working on creating a specific standard of care for adults living with Angelman Syndrome.
- We’re finalising our service provider training.
- We’re launching a web-based AAC program made specifically for those living with Angelman Syndrome.
- We’re continuing to support research and clinical trial readiness initiatives.
- We’re launching our new strategic plan at the end of the year.
- We’re working on possible virtual clinics.
- We’re planning for the 2024 family conference at the Kalahari Resort in Sandusky, Ohio, from July 23rd to 26th.
How You Can Help
You can help us raise funds for the Angelman Syndrome Foundation by giving feedback on your phone. Text ASF to 90412 and follow the instructions. Every piece of feedback gets us closer to our $30,000 goal with our partner, HundredX. We have until August 1st to reach this goal.
Thank you for all your support and for allowing us to be a part of your journey. Enjoy the virtual conference and we’ll see you soon.
- Title: 2023 ASF Virtual Conference – Intro
- Author(s): Amanda Moore
- Author(s)’ affiliation: ASF
- Publication date: 2023-07-07
- Collection: 2023 ASF Virtual Conference