Stories, comments, insights

ASF Blog

May 21, 2024

Update: Inaugural AS Congressional Advocacy Day

Since our inaugural Angelman syndrome congressional advocacy day on March 7, FAST, ASF and our AS advocates all have not let up the gas on making our asks to Congress. Our advocates have followed up requesting that their Senators and […]

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March 19, 2024

Inaugural AS Congressional Advocacy Day

On March 7, 2024, Angelman syndrome advocates from around the United States met in Washington, D.C. for the Inaugural Angelman Syndrome Congressional Advocacy Day.  In preparation for the event, ASF, FAST and our partners, Faegre Drinker and Soapbox, led a […]

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February 20, 2024

Rare Disease Week 2024

 FAST and ASF will be joining numerous other rare disease groups on Capitol Hill in person.  While we are in DC,  we invite the Angelman syndrome community to register for  informative sessions with the NIH, Everylife Foundation and FDA and […]

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November 30, 2023

Amanda’s Story of Status

The past month has been a real rollercoaster for our family with many sleepless nights and a mix of emotions from uncertainty to anxiety due to Non-Convulsive Status Epilepticus (NCSE). I want to share our recent experience in hopes that […]

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November 3, 2023

Angelman syndrome and the Gut

In this exclusive Q&A session, we heard from a remarkable individual who wears multiple hats— a mother, a pediatric gastroenterologist, and a physician-scientist. She is on a mission to improve the lives of those dealing with neurodevelopmental differences. Kara Margolis, […]

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October 27, 2023

Caregiver Awareness Month

November is Caregiver Awareness Month. To honor the loving, hard working, remarkable caregivers of the Angelman community, we’ve compiled a list of resources and services geared toward YOU, the caregiver. Even though caring for an individual with AS can be […]

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October 16, 2023

Ultragenyx Pharmaceutical Development Pipeline

Ultragenyx Pharmaceutical provided updates on its development pipeline, including investigational GTX-102 for Angelman syndrome (AS) at Analyst Day held Monday, October 16, 2023.  For GTX-102 the antisense oligonucleotide for Angelman syndrome, UGX reported data from the extension cohorts in the […]

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