2022 Virtual AGS Family Symposium

ALwaYs Growing Stronger, Together

Saturday, February 5th - 10AM to 5PM EST

The conference was a success! You can find presentations embedded below, but we have shared all of the live content on our 2022 AGS Family Symposium Showcase on Vimeo. We have prioritized translated subtitles for clinically relevant presentations. If you have a subtitle/language request for a particular portion of the conference please let us know!

Watch AGSAA Recordings

Watch GLIA Hosted Recordings

The AGSAA and our partners from The Global Leukodystrophy Initiative held a virtual AGS Family Symposium.

At 10AM EST on Saturday February 5th, 2022, we convened scientists, researchers, clinicians, and AGS families for a highly interactive conference to discuss recent advancements and opportunities in combating and treating Aicardi-Goutieres Syndrome. In addition to presenting information and updates, we had a number of engaging features. We spent time with other AGS families, talked live with researchers and health care providers, and held some live polling and question and answer sessions.

The conference has ended but you can still subscribe to our contact list for updates.

Live Polling Results

During the conference, we asked families to answer a number of questions that illustrate the complexity and challenges we face.

View the Results.

Symposium Program

SESSION I: Advancing Advocacy

10:00 – 11:30 a.m. EST

Welcome Video

AGSAA Team and History

Face to Face with AGS - Phippin

Reflections on Advocacy, Organization, and Community

It’s Complicated: Discussing AGS Identification, Management & Treatment with Dr. Adeline Vanderver

Changing the Game: Introduction to the AGSAA Patient Registry

SESSION II: Community Lunch & Learn Session

11:30 a.m. – 1:00 p.m.

During our first break, we invite families to join community led breakout rooms to discuss various topics of interest to the AGS community. Conference participants should feel free to move between rooms and engage in casual conversation. Hosts will not be presenting, but rather, they will facilitate conversations by offering their experiences and asking for yours. See the full program below for details.

SESSION III: Research Updates

1:00 – 3:30 p.m.

Live: Dr. Laura Adang discusses Reverse Transcriptase Inhibitors (RTIs) and Newly Identified AGS related genes

Introduction to Biomarkers and Baricitinib Trial Data Review

Laura Adang, MD, PhD

Live: Dr. Laura Adang Question and Answer

Paper Review: “Genome Instability Independent of Type I Interferon Signaling Drives Neuropathology Caused by Impaired Ribonucleotide Excision Repair”

Peter McKinnon, PhD, and Aditi Aditi, PhD

Paper Review: “Efficient Generation and Correction of Mutations in Human iPS Cells Utilizing mRNAs of CRISPR Base Editors and Prime Editors”

Min Ae Lee-Kirsch, MD

We are unable to provide a recording of Dr. Lee-Kirsch’s presentation, but the paper she reviewed can be read online.

Sürün D, Schneider A, Mircetic J, Neumann K, Lansing F, Paszkowski-Rogacz M, Hänchen V, Lee-Kirsch MA, Buchholz F. Efficient Generation and Correction of Mutations in Human iPS Cells Utilizing mRNAs of CRISPR Base Editors and Prime Editors. Genes (Basel). 2020 May 6;11(5):511. doi: 10.3390/genes11050511. PMID: 32384610; PMCID: PMC7288465.

Live: Drs. McKinnon and Lee-Kirsch Question and Answer

Introduction to Clinical Outcome Assessments and Data Review

Francesco Gavazzi, MD

Introduction to the AGS Natural History Project

Adeline Vanderver, MD

Live: Drs. Gavazzi and Vanderver Question and Answer

SESSION IV: Clinical Care Breakout Session

3:30 – 5:00 p.m.

In our final session, breakout rooms will be hosted by clinical care providers. Conference participants should feel free to move between rooms and engage with doctors, therapists, and more. Hosts will not be presenting, but have recorded short presentations to help you understand their expertise and specialty.

Who can join?

You! Everyone is welcome. During registration, please let us know how you found out about the conference. We encourage friends, families, and health care providers to join and learn more about AGS.

Is this event For the USA only?

No! Everyone is welcome. We have presenters hailing from the UK and Germany. While the conference will be held primarily in English, we will provide a computer generated transcription in requested languages. We are also looking for families that can help live translate Question/Answer sessions and breakout room conversations.

Will the Conference be recorded?

Yes. Most of the presentations and conversations will be recorded and provided online after the conference. Some breakout sessions will be recorded but reviewed and edited so that families can comfortable discuss personal, private details.