Join us as we sit down with Megan, a courageous mother and founder of the Aicardi Goutières Syndrome Advocacy Association, as she shares her heartfelt journey. From the challenges of navigating the medical system to finding hope in the midst of adversity, Megan opens up about her experiences raising a child with AGS and coping with the profound loss of her daughter. Discover the strength, resilience, and invaluable insights she offers to families facing rare diseases and grief. Tune in to gain a deeper understanding of AGS and find inspiration in Megan's unwavering advocacy and enduring love.

💚The Aicardi Goutieres Syndrome Advocacy Association works to improve the lives of individuals and families living with Aicardi-Goutieres Syndrome (AGS).

💙AGSAA is a global coalition of deeply dedicated parent advocates working alongside clinicians, researchers, and scientists. We are united in our desire to improve the lives of individuals and families living with and yet to be diagnosed with Aicardi-Goutières Syndrome using our learned experience and honoring those before us.

💚AGSAA is a 501c nonprofit foundation

💙Our Mission: Rescuing Potential. Everything we do reflects a sense of urgency to rescue patient potential and preserve quality of life. We’re focused on accelerating research and providing timely emotional outreach and educational support alongside evolving clinical care recommendations to affected families.

💚 Socials: @agsadvocacy on all socials
💙 Podcast: https://anchor.fm/agsadvocacy/

#aicardigoutieressyndrome #disabilitiesawareness #raredisease

🎧 Audible: https://music.amazon.com/podcasts/ce67f9a8-3b3a-453b-a689-52db2feaf375/the-rare-advocates

🎧 Spotify: https://open.spotify.com/show/3S2K2zmVYauOgktU8G3Pdx

🎧 Apple Podcast: https://podcasts.apple.com/us/podcast/the-rare-advocates/id1653511092

🎧YouTube: https://www.youtube.com/channel/UCOBML-3m7Q_iWZW3fvItFgA

#aicardigoutieres #rarediseases #leukodystrophy #symptomsofleukodystrophy #dystonia #rarediseaseday