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2019 Wrap up

January 1, 2020

2019 Wrap up

It is hard to believe that it has only been 7 months since I started my role at the Angelman Syndrome Foundation. Time flies when you are working to kick AS!

One of the first things I set out to do, was hear from as many of you as possible about what you wanted the ASF to work on and how we can serve you better. I was thrilled when over 1,000 of you completed our Voice of the Community Survey and gave us amazing feedback. Below is some of the feedback we received.

Results of the Voice of the Community Survey

 

What will we do with this information? I am glad you asked. We have been working hard to answer the call of the community:

  • Created an Adults Services task force to determine what we can do at the ASF to support our adult individuals with AS.
  • We have expanded our clinic network in order to decrease the burden of travel for our families as well as increase the level of clinical expertise.
  • We are working on communication plans to help those we serve understand what ASF does and what AS is.
  • We created the ASF Family Fund that can support families in their journey. Applications will be open 2 times per year and will grant $50,000 per year.
  • We are working on updating our Behavior series and Communication Training Series to be more interactive as well as accessible in Spanish.

Updates about these programs are coming soon and I am excited to be able to offer them to you now and in the future.

As a mom to Jackson who has AS, I am determined and hopeful for what is coming for my son and so many like him. Please feel free to reach out to me and share with me your thoughts, frustrations, concerns, etc. I am here to work hard for you your family. We will walk this journey together step by step.