New Diagnosis of Angelman Syndrome

Newly Diagnosed

Amanda Moore and family

A message from Amanda Moore, CEO

With our son Jackson’s diagnosis of Angelman syndrome, my husband and I were overwhelmed. We had no idea where to start or how to process the news. It was not until a doctor told us to reach out to the Angleman Syndrome Foundation (ASF) that we truly started to find answers and hope.

With the ASF, you will find a community of people who understand what you are going through. Whether it is connecting you to a local family, educating you at an ASF Family Conference, opening more ASF AS Clinics or just listening, the ASF is here to provide you with whatever you need at any point of your journey.

I would love to hear from you and support you in any way that I can. You can reach me at amoore@angelman.org or 800.432.6435. My family and I are honored to serve this community and look forward to meeting you at an ASF Walk or Family Conference!

What Now? 

Families sometimes don’t know where to turn or what to do once they’ve received a diagnosis. The good news is that you found the ASF!  The ASF has been supporting families for over 25 years while funding the research that has made the biggest strides toward a cure for Angelman syndrome. We and our network of families are here for you.

Start with the steps below.

1.

Fill out the Contact Registry.

We will add you to our email list and send you information about Angelman syndrome and ways the ASF can help you begin this journey.

Have a specific question and want to contact the ASF right away? Call 800-432-6435 or email info@angelman.org.

2.

Download First 100 Days Journey.
En Espanol: Primeros 100dA-as-de-viaje 

This is a guide to navigating the first 100 days after an Angelman syndrome diagnosis. In checklist format, it provides  steps you can take to help your child thrive and resources available to assist you along the way. 

3.

Register for the next AS 101 Webinar.  

Join other newly diagnosed parents and learn about Angelman syndrome, the research around it and supports that are available to help you through the journey. 

AS 101 is held every other month on the 3rd Tuesday at 8pm EST.

4.

Make a connection.

A rare disease diagnosis can be isolating. Connect with others who understand. 

ASF Family Champions are available to chat and share where they are in their journey. Maybe there’s one near you!

ASF Family Resource Team is ready help on specific issues or questions related to finding services, insurance and waivers, education concerns and more. 

5.

Stay informed. 

Find out about events in your area and news about the exciting things happening in Angelman syndrome research. 

See if there is an ASF Walk near you and visit our Events page for more listings.

Open our emails when you get them and follow us on social media. 

6.

Enroll in LADDER

LADDER is a database that gathers information about individuals with Angelman syndrome to be accessed by researchers and doctors.

Enrollment in LADDER: 

  • Helps advance research and clinical trials.
  • Reduces the number of times you will need to fill out the same information when participating in collaborating research studies or visiting a 15q Clinical Research Network Clinic