What is Aicardi-Goutieres Syndrome (AGS)? Centering Advocacy: Understanding the Impact on Families

What is Aicardi-Goutieres Syndrome (AGS)? Understanding the Impact on Families was presented by Dad Advocate, Patrick Winters, at the Aicardi Goutieres Syndrome session of the 2023 ULF Family Conference. In this video we will cover:

What is Aicardi Goutieres Syndrome?
How does AGS impact families?
What causes Aicardi Goutieres Syndrome?
How does Aicardi Goutieres Syndrome work?
What treatments are available for Aicardi Goutieres Syndrome?
What's on the horizon for Aicardi Goutieres Syndrome?

Presented at the AGS session of the 2023 ULF Family Conference (https://agsaa.org/2023-ulf).

Chapters:
0:00 Intro by Patrick Winters
0:47 What is Aicardi Goutieres Syndrome?
2:04 Meet the faces of AGS
4:25 How does Aicardi Goutieres Syndrome impact families?
7:01 Symptoms and Clinical Features - https://agsaa.org/family-and-physicia...
10:44 The AGS Scale: Neurologic Severity - https://agsaa.org/news/2023/3/15/the-...
14:19 Genetic Basis: AGS Genes
19:06 AGS as a Leukodystrophy
22:55 Diagnosis & Genetic Testing
26:06 Newborn Screening (NBS) - https://agsaa.org/nbs
28:55 Treatment: JAK Inhibition (JAKi) - https://agsaa.org/jaki
32:51 Barriers to JAKi Access
35:26 Emerging Therapies
38:36 Clinical Trials - https://agsaa.org/clinical-trials
40:25 Help us make Progress!!

💚The Aicardi Goutieres Syndrome Advocacy Association works to improve the lives of individuals and families living with Aicardi-Goutieres Syndrome (AGS).

💚AGSAA is a 501(c)(3) nonprofit, charitable foundation

💙Our Mission: Rescuing Potential. Everything we do reflects a sense of urgency to rescue patient potential and preserve quality of life. We’re focused on accelerating research and providing timely emotional outreach and educational support alongside evolving clinical care recommendations to affected families.

💚 Socials: @agsadvocacy on all socials
💙 Podcast: https://anchor.fm/agsadvocacy/

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