Many of you may already know that we recently launched an AGS patient registry, and we’re actively working with our partners to develop studies and gather insights. This morning we jointly published a press release to let everyone know of our promising collaboration.
“With committed community engagement and thoughtful stewardship of our data, we will finally have what we need to tell our story and begin to write a different ending.”
The American College of Rheumatology and the European Alliance of Associations for Rheumatology have published recommendations for diagnosing, managing, and treating type 1 interferonopathies like Aicardi-Goutieres Syndrome. The AGSAA’s own Devon Cordova participated in this working group that brought experts together to review literature, consider patient perspectives, and publish recommendations for a group of rare diseases that includes AGS.
Admittedly, dads are a little… well, dad, sometimes. For that reason we’re starting an AGS Dads group. E-mail ags-dads@agsamericas.org to join. We’re holding our first virtual get-together on Saturday, January 29 from 6:00 – 7:00pm EST.
We are so incredibly excited to announce the launch of the AGS Patient Registry. The AGSAA has partnered with Luna and Genetic Alliance to put our community in the driver’s seat while we race to advance policy, medicine, and AGS care. In AGS as in other rare diseases, our stories are our superpower!
We’re excited to announce our virtual family symposium held in partnership with the Children’s Hospital of Philadelphia’s Leukodystrophy Center of Excellence. We’re planning a day of research updates, socialization, and fun. Click to learn more and register, and we’ll keep you up to date as we finalize the agenda and details!
Our wonderful Jeana Banta put together an AGS friendly Amazon wishlist to use as a holiday gift guide. Share ideas with friends and family that might have difficulty finding the right gift for you family.
We need your help prioritizing topics for our upcoming family symposium.
And, we want your feedback to help us prioritize our 2022 goals.
And, we’re going to raffle gift cards to responders!
We simplified the survey, which should now take just a minute or two; and we’re going to value your time and feedback… with money! For every 50 respondents, we’ll raffle a $25 Amazon Gift Card. If you’ve already completed our survey, don’t worry… you’re already in the raffle.
We’d love your help to spread a little extra cheer for the new year!
Think of it as a classic holiday secret gift swap - but the real gift here is the opportunity to send and receive 30ish second videos from fellow AGS Families. Share your hope, perspective, wisdom, kindness, encouragement, validation, or whatever you feel would help another family keep going and growing in the new year.
It only takes a minute to sign up and once we have a few families to randomly pair, we’ll follow up with additional instructions and your intended recipient!
We were so humbled on #GivingTuesday by the generosity of our 70 donors, including AGS mama @ash.matura and her family for their phenomenal donation match. We multiplied our original lofty goal of $2,000 by 5. That’s kind of bananas. Thank you to everyone around the world who continues to support AGSAA and to those who shared our fundraiser with your community. It mattered. Your family matters. This matters.
The AGSAA is fundraising for our 2022 programs. On this Giving Tuesday we are raising money for our Hardship Meal Card program which aims to provide a small financial respite to AGS families who are in the midst of an emergency by providing meal gift cards during hospitalization. Full details of the program can be read at Programs and Resources. Our goal this Tuesday is to fundraise $2000 for this program.
#GivingTuesday AGS Americas Association
Baricitinib is recommended to be available as a treatment option through routine commissioning for adults and children 2 years and over with monogenic interferonopathies within the criteria set out in this document.
When I was a college sophomore living in a sorority house at the University of California at Santa Barbara, my parents called to tell me that my baby brother, Gavin, was dying. He had been given a diagnosis of a very rare disease, Aicardi–Goutieres Syndrome.
The doctors immediately placed him in hospice care.
He was 4 months old.
