Stories, comments, insights

ASF Blog

September 2, 2022

Our Visit to an AS Clinic

  Ever since being diagnosed with Angelman syndrome, we longed to be able to take our children to an Angelman Syndrome Clinic here in the USA. We decided on the clinic at Children’s Hospital Colorado with Dr. Jessica Duis and […]

Read more
July 25, 2022

Maddie’s Mission

Our daughter, Maddie Sargent, was diagnosed with Angelman syndrome in January 2020. Mystified, terrified and on the brink of a worldwide pandemic, we were determined to find the most experienced providers to care for our girl. We took Maddie to […]

Read more
May 31, 2022

Lizzie Sordia Shares Nathan’s Diet Therapy

I am so grateful to be able to share our story with you. It starts out probably very similar to yours. It was Nathan’s seizures that led us to his Angelman syndrome diagnosis. Over 80% of individuals with AS develop epilepsy. […]

Read more
January 2, 2022

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 […]

Read more
November 12, 2021

International 15q Day

November 15th is International 15q Day.  Angelman, Prader-Willi, and Dup15q syndromes are all distinct neurodevelopmental disorders that are caused by changes within the specific q11 to q13 region of chromosome 15 (called 15q). This region contains a number of important […]

Read more
August 5, 2021

Sibling Spotlight: Jackson Walden

    Jackson Walden, and his twin brother Grady, who is diagnosed with AS, are 6 years old. Jackson is always Grady’s biggest cheerleader and knows how to help and love on Grady!    What is your favorite memory with […]

Read more
July 14, 2021

Behind the Smiles Documentary

  Emily Ray tells the story of her son’s journey to diagnosis in “Behind the Smiles,” winner of Best Documentary at SAE Institute’s Black Sheep Film Festival in Dubai, January 2021.  Emily and Sam live in Dubai, and Sam recently […]

Read more
June 4, 2021

Sibling Spotlight: Mathew Perry

    Mathew Perry is the older brother of Evin, who is diagnosed with AS.   What is your favorite memory with Evin?  My favorite memory together is taking Evin on zoo trips, just the two of us. We called […]

Read more