Stories, comments, insights

ASF Blog

September 22, 2023

Community Update from Ultragenyx

Ultragenyx Pharmaceuticals, (sponsor of the GTX-102, an Antisense oligonucleotide for the potential treatment of Angelman syndrome) has issued a letter providing an update on their program. See the letter below.             Ultragenyx Novato, CA 94949 […]

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July 6, 2023

Roche Answers to Community Questions

Roche has responded to our request by answering questions from the community regarding their recent decision to not initiate any new trials of rugonersen (RO7248824) in Angelman syndrome.  Download Questions & Answers from Roche  Or scroll down to see the […]

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December 30, 2022

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 […]

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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 […]

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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 […]

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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. […]

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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 […]

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