2021 Year in Review
What a year it has been for our community! As I reflect back on 2021, I am filled with mixed emotions. On one hand, it has been such an amazing year for the ASF and the community when it comes to progress with new programming and possible treatments in the pipeline. On the other hand, our community is still dealing with the effects of COVID. Whether it is still not having access to programs or resources for their loved one with AS, dealing with remote learning, continued illnesses from COVID, exhaustion, and much more.
We here at the ASF have felt the impact and are working hard to support the community now and into the future. One of the ways we did that in 2021 was by starting the ASF Counseling program. Even though caring for an individual with AS can be rewarding, we know that it can be challenging, stressful and isolating. With this program anyone who is connected to an individual with AS has access to FREE counseling services. Since it started in April, we have supported over 500 people with this program.
A few other things we’ve worked hard on this year:
- Creating clinical care and support for all those living with AS. Through our clinic network we created multiple seizure documents that can be used to support anyone with AS. We also funded studies that will investigate GI issues and shaking and tremors or non-epileptic seizures in AS. We are also proud that our 20 clinics around the world have served more than 1,000 patients this year.
- The ASF Family Fund continues to be something we are incredibly proud to offer. This year, we continued working with the Canadian Angelman Syndrome Society and developed a new partnership with Angelman UK to help families outside the US. We were proud to be able to expand the reach of this program during such hard years to support families and provide life changing items for individuals living with AS. To date we have awarded 368 families.
- We have concentrated heavily on AS siblings this year. Through our Friends With Wings program and our Older Siblings program we have provided an outlet for siblings to learn more about AS, talk about the struggles they experience and much more. To date we have over 200 siblings signed up for these programs.
- This year ASF Funded Research has moved into pre-clinical trials. Dr. Ben Philpot has entered a partnership with Taysha Pharmaceuticals and AskBio and Dr. Stormy Chamberlain entered into an agreement with OVID. It is because of your hard work and the funding from the ASF that this work has been noticed and possible. To learn more about ASF funded research, click here.
- We are so proud that this year we launched the LADDER database. Linking Angelman and Dup15q Data for Expanded Research (LADDER) is a database platform that links data on individuals with Angelman syndrome collected from multiple sources, such as research studies, registries, caregiver reports, and clinic visits. By linking these sources of information, LADDER can expand research and accelerate the development of interventions and treatments for individuals with Angelman or Dup15q and their families. We would love for you to participate and it is easy to do so. Please click here
There are so many other reasons to celebrate this year and I know that none of this would be possible without the love, support, and dedication of this community. I want to thank each of you for working so hard to fundraise, coordinate and advocate for the Angelman Syndrome Foundation. We are a passionate community, and because of that we have been able to advance at a rapid pace.
What is ahead for us here at the ASF? We will continue to work hard to meet the needs of our community and follow the strategic plan of the organization. We will also be celebrating 30 years of service to the Angelman community in 2022 with many events, activities and more. Here is just a peek at what is on our goal list for this year.
- Continue to support adult services by expanding the work and the resources provided to the taskforce.
- Expand clinical care and the AS Clinic network to serve more families. Big announcements coming in January.
- ASF Family Conference and Research Symposium, August 2 – 5, 2022.
- Expansion of support programs including a brand new communication training as well as local meet ups.
- Increasing our advocacy work and partnering with FAST to ensure ALL AS voices are heard.
- The 2022 ASF Walk WILL be in person after 2 years of being apart.
- Launching the Parent Advisory Board in early 2022.
- Continue to support research by providing two grant cycles per year as well as adding new dollars to support our clinicians to expand their services to the community.
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 amoore@angelman.org. 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.