Hailey’s Grace
To have grace means to act with kindness, understanding, and politeness, even when faced with challenges. Our mission is to educate and empower parents, fostering a supportive community for those navigating similar challenges.
AGS
Aicardi-Goutières Syndrome (AGS) is an autoimmune disorder that mainly affects the brain, the immune system and the skin in infants and babies. While there is currently no cure, there are supportive therapies to help manage symptoms, and research is rapidly advancing toward new treatments. Families affected by AGS are not alone—support networks and advocacy organizations are here to help guide, inform, and connect you every step of the way.
Ways to Help
Children’s Hospital of Philadelphia (CHOP) is at the forefront of research and treatment for Aicardi-Goutières Syndrome (AGS). Aicardi-Goutières Syndrome Advocacy Association (AGSAA) is a global non profit organization dedicated to supporting individuals and families affected by AGS. Continued support for both of these platforms is vital in driving the medical breakthroughs that families like ours are counting on. With your help, Hailey’s Grace can continue this journey toward the best care, therapies, and support Hailey needs to thrive.
Lets raise awareness
Every voice matters, and every action counts. By sharing our stories and getting involved, we shine a light on Aicardi-Goutières Syndrome (AGS)—a rare and often misunderstood condition. Awareness leads to understanding, which fuels research, support, and hope. Your support can change lives. Whether it’s donating to AGSAA or CHOP, purchasing Hailey’s Grace merchandise, or joining our online communities, every contribution brings us one step closer to better treatments, earlier diagnoses, and ultimately, a cure.
Together, we can give AGS families the hope they deserve.
Treatments available at CHOP
Donating to the Children’s Hospital of Philadelphia (CHOP) is a powerful way to support groundbreaking research and clinical care for children with rare genetic syndromes. Their commitment to understanding and treating rare genetic syndromes continues to make a profound difference in the lives of patients and their families. Any donation will continue to assist in those efforts.
AGSAA supports those affected by AGS
The Aicardi-Goutières Syndrome Advocacy Association mission reflects sense of urgency to rescue patient potential and preserve quality of life. They are focused on accelerating research and providing timely emotional outreach and educational support alongside evolving clinical care recommendations to affected families. Working to keep the patient perspective central to global research and treatment efforts.
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