2022 Year in Review
As we welcome in a New Year, I want to share with you the accomplishments you’ve helped make possible in 2022. It was an exciting year of growth and success as several programs advanced to improve the lives of all those living with Angelman syndrome. THANK YOU for supporting this crucial work!
Each person reading this has helped make a difference at the Angelman Syndrome Foundation this year and has been woven into our impactful 30-year history. I am in awe every day at the passion, tenacity, perseverance, and drive this community has to improve the lives of all those affected by AS. Because of you, we have much to celebrate and amazing things to look forward to in 2023!
In 2019, survey results revealed a significant need for more resources for adults living with AS. In response, the ASF Adult Task Force was created to expand and improve our resources, education, and support for adults with AS and their caregivers. We now have an extensive library of relevant resources, an Adult Family Champions program for peer-to-peer support and have expanded the ASF Family Fund to ensure adequate support for adults with AS is available. In 2023, we look forward to continuing this work and creating a training for respite providers.
I am thrilled to share that our third year of the ASF Family Fund has been a great success. In collaboration with the Canadian Angelman Syndrome Society and Angelman UK, we’ve been able to support over 385 families! The feedback we receive from families is incredible and we have you to thank for this: “Laurel has so much to say. With the help of the ASF Family Fund scholarship, she will now be able to express her thoughts, feelings and needs much more efficiently with her new AAC device. It’s certainly going to be a learning process for all of us but we’re ready for the challenge! Thank you so much for your help!”
In 2021, we established a counseling program for anyone supporting an individual living with AS. Since then, over 1,000 family members have received counseling services free of charge. In further support of our caregivers, we hosted webinars on stress and mental health and collaborated to offer a free screening of Unseen, a documentary bringing to light the struggles of caregivers. Mental health services and support for caregivers will continue to be an important component of our family support programs in 2023.
Our long-awaited and innovative approach to collaboration, shared learning, and better clinical care, the LADDER Learning Network, launched this year! This critical program is designed to connect and close the communication gaps between families, clinicians, researchers, and the pharma industry to better serve patients living with AS, now and in the future. I am proud to share that every current clinical trial related to AS is happening in an ASF supported clinic! You can expect that ASF is committed to strengthening and growing this program and ensuring our clinics are ready to administer clinical trials and, eventually, life-changing treatments.
Finally, ASF has proudly funded 17 research projects this year that we believe will play an important role in improving the trajectory of treatments, services, and outcomes for those with AS. ASF’s previously funded research projects have made critical discoveries that have greatly improved our understanding of AS, led to clinical trials, and supported increased funding for AS projects by the National Institute of Health. We look forward to continuing to support new and innovative research projects that have potential to shape the future of all those with AS.
There is much to be incredibly proud of thanks to our supportive community who allows us to do this important work. As I reflect and look to 2023, I am more inspired and motivated than ever. I am excited to continue ASF’s collaborative spirit and work together as a united community to provide critical services and support those with AS and their families. ASF started 30-years ago by a handful of dedicated parents, and I promise that all of us here at ASF will continue to do our best to live up to the mission they set. Please know that I am always here to support, listen, and get the resources you need to improve your quality of life and that of your loved one with AS. Thank you for placing your trust in me and the Angelman Syndrome Foundation.
We are here for you throughout your journey! And we are so grateful for you!
As always, we are here to support you and we want to hear from you. If you have ways that you would like to see ASF support the community, please reach out to me at email@example.com. It has been my honor to serve this community and I want to make sure we are doing everything we can to support each of you. Happy New Year to you and your family….here is to a game-changing year in 2022.