2023 ULF Family Conference
Friday, June 23rd 2023
The AGSAA hosted a session about AGS at the 2023 ULF Family Conference. With a focus on advocating for individuals with AGS (Aicardi-Goutières Syndrome), this session provide attendees with knowledge about the latest advancements in research, treatment options, and support services available. Whether you're a parent, caregiver, healthcare professional, or an individual living with AGS, this session should provide valuable insights.
About the Aicardi Goutieres Syndrome Advocacy Association (AGSAA)
Has someone you know been diagnosed with Aicardi Goutieres Syndrome? Learn about the Aicardi Goutieres Syndrome Advocacy Association. In this video, dad advocate and volunteer shares during the United Leukodystrophy Foundation Conference how the Aicardi Goutieres Syndrome Advocacy Association helps caregivers. AGSAA is a global coalition of deeply dedicated parent advocates working alongside clinicians, researchers, and scientists. We are united in our desire to improve the lives of individuals and families living with and yet to be diagnosed with Aicardi-Goutières Syndrome using our learned experience and honoring those before us.
Presentations Slides
About Aicardi-Goutieres Syndrome (AGS)
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?
Presentation Slides
UNLOCKING THE POTENTIAL OF INDIVIDUALS WITH AGS: INSIGHTS FROM THE CHOP NATURAL HISTORY STUDY
Presented by Dr. Francesco Gavazzi of the Children’s Hospital of Philadelphia
Note: Dr. Gavazzi’s presentation and recording is currently embargoed. We’ll release the recording and slides once the data has been published, which is expected by the end of Fall 2023.
Dr. Francesco Gavazzi will share novel information and data about the functional and cognitive abilities of individuals affected by AGS. Dr. Gavazzi will discuss his insights and experiences from conducting numerous surveys and assessments of patients for the Children’s Hospital of Philadelphia (CHOP) natural history study for AGS. Dr. Gavazzi will highlight the potential functional abilities of individuals with AGS, spanning though gross and fine motor function, cognitive and adaptive behavior abilities. There will be an extensive Q&A session for families in attendance (both in-person and virtually).
Overcome the Overwhelm: Shifting the Mindset at Home to Support Your Family's Advocacy Journey
Lauren Lowery, an AGS mom and ICF accredited life coach, walks us through strategies to have a healthier and happier home, an essential part of being an effective advocate and caregiver.
Presentation Slides
