Contribute to AGS Clinical Trial Development: Join the Biogen Study

Update: Our patient registry project with Biogen has been completed as of January 2024 and we are now pivoting to our AGSAA Contact Registry and a partnership with Ciitizen to create an AGS Natural History Study by using patient medical records to unlock key insights and data for research and treatment opportunities - both launching April/May 2024.

Update: in light of an astonishing response, we’ve paused the Biogen patient registry study. See our update.

AGS Families,

We have an opportunity for you to make a meaningful impact on the development of an AGS clinical trial. We'd like to invite you to participate in a patient registry study sponsored by Biogen aimed at understanding AGS better and improving the clinical trial development process.

💡 Why Participate?

Make a Difference: Your valuable insights will contribute to advancing a Biogen clinical trial in AGS and potentially lead to a more effective and convenient clinical trial.

$50 Amazon Gift Card: As a token of appreciation for your time, Biogen is offering a $50 Amazon gift card to everyone who completes the survey.

30 Minutes Well Spent: The survey will only take about 30 minutes of your time, but the impact it can have on AGS research is immeasurable!

👉 How to Participate:

1. Click on the survey link below to get started:

2. Complete the survey with your honest responses.

3. Share this information with other AGS families to maximize our collective impact.

🌐 Learn More:

To delve deeper into the world of AGS research and clinical trial development, consider these resources:

• AGS Patient Registry: Stay connected with the AGS community and access valuable information. Link to AGS Patient Registry.

• Biogen Webinar: Discover more about Biogen's commitment to AGS research in our first webinar. Link to the Webinar.

Let's unite as a community and contribute to a brighter future for those with AGS. Your involvement is significant, and together, we can make a real difference.

Thank you for being the incredible AGS advocates that you are. Let's spread the word and make AGS history together!

Our Bittersweet Story of an Effective Treatment Just Out of Reach

There is no cure for AGS.

There is no time machine to go back and repair the havoc it causes once triggered. But, there IS a treatment option available right now that buys us valuable time by halting the aggressive inflammatory response that causes brain, nervous system, and organ damage.

The AGSAA, AGS experts, and AGS families overwhelmingly recommend the use of a class of drugs called “JAK inhibitors” to ameliorate the consequences of AGS disease activity. A global task force of specialists with the ACR, EULAR, NIH, CHOP, GLIA and more officially determined these drugs to be beneficial.

The most widely used and studied JAK inhibitor for AGS, baricitinib (brand name Olumiant, created by big pharma co Lilly ) was repurposed to treat AGS and other related conditions. This is called “off-label” use, a highly common practice in healthcare but can cause frustrating issues with insurance, pharmacies, and doctors when the U.S. Food and Drug Administration (FDA) hasn’t given their stamp of approval. AGS was put forth for this designation in February 2020, but was not approved for reasons unknown, and has been in limbo since. While we are not permitted to advocate for a specific drug directly with the FDA, we are working on other ways to get Aicardi-Goutieres Syndrome on their radar so they fully understand our patient experience, burden of care, and why we need equitable, timely, and affordable access to the ONLY treatment option available.

If we had Alopecia, COVID-19, or Rheumatoid Arthritis we would be able to get this prescription easily, often with Lilly subsidizing it through their Lilly Cares cost assistance program which all AGS patients are excluded from. Beyond that, AGS family access is further determined by location, competence and commitment of their prescribing doctor, insurance type, income, and other factors that should never matter when it comes to keeping your child alive and well.

Help us tell this important story to Lilly to remind them of our desire to collaborate and to the media so families get the access and support they need.

Sign our petition today and join 2,300+ supporters so far!

For media inquiries: see our Media Resources and use our contact form or email info@agsaa.org.