[Today’s Date]

Dear Eli Lilly,

My name is [insert name] and I’m writing this letter to advocate for my [son/daughter/etc] [insert AGS loved one name]. [AGS loved one’s name] is a [x] year old who is [insert some lovely adjectives about your kiddo here!]. [AGS loved one’s name] has Aicardi Goutieres Syndrome, a leukodystrophy that [describe how AGS impacts your loved one].

AGS primarily affects the developing brain and immune system of infants and toddlers, most often resulting in profound developmental delays, lifelong physical impairments, and persistent neurological changes. The overactive immune response in individuals with AGS also impacts every organ system. Our patient advocacy group, Aicardi Goutieres Syndrome Advocacy Association (AGSAA), AGS experts, and AGS families overwhelmingly recommend the use of JAK inhibitors to ameliorate the consequences of AGS disease activity.

The AGSAA will be meeting with Eli Lilly representatives on November 17th to discuss how we move forward with obtaining AGS designation and approval for baricitinib.

Studies have shown that AGS children of all ages and degrees of neurologic severity have the potential to benefit from baricitinib, including both improvements in their quality of life as well as the acquisition of developmental skills/milestones. Treatment with baricitinib requires a long term commitment; the primary goal of treatment is to offer protection against brain damage. Many parents report an immediate improvement in irritability, sleep, and secondary symptoms (e.g. skin issues). JAK inhibition remains complex, requires careful monitoring for changes and events related to significant immunosuppression, and typically involves a multi-disciplinary approach.

Access and cost to baricitinib continue to be monumental hurdles AGS families face. It remains devastating and infuriating that the only option currently available for treatment of AGS remains out of reach for so many families.

We implore you to work directly with AGSAA going forward to better understand and represent challenges faced by the global community of families living with AGS. Proactively invest in our advocacy efforts so that all AGS impacted individuals have equitable and timely access to the only available treatment, and help ensure our continued health and success.  We need Eli Lilly’s partnership to build customized solutions unique to our needs, and we are relying on you to actively choose collaboration and progress going forward so that together we can create meaningful change.

Thank you for your consideration,

[Your Name]