In this heartwarming episode of The Rare Advocates, we sit down with Ashley Matura, the mother of an incredible 7-year-old named Ryan. Ryan has been diagnosed with Aicardi Goutieres Syndrome, a rare genetic disorder, and faces various challenges and disabilities. Join us as we delve into their inspiring journey and explore the world of Augmentative and Alternative Communication (AAC).🌟

Topics Covered in this Episode:

🤝 Introduction to AAC: What is Augmentative and Alternative Communication, and how it has become an invaluable tool for individuals like Ryan.

🤔 Who Qualifies for AAC: Learn who can benefit from AAC and how it can be tailored to individual needs.

📚 School and AAC: Discover how AAC has enhanced Ryan's educational experience and its positive impact on his learning journey.

🌈 Best Etiquette: Ashley shares insights on interacting respectfully with someone using AAC, promoting inclusivity and understanding.

💚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/

#AAC #AicardiGoutieresSyndrome #Inclusivity #Podcast #Inspiration #Communication #Parenting #SpecialNeeds

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