PODCAST · education
The Rare Advocates
by Aicardi Goutieres Syndrome Advocacy Association (AGSAA)
Welcome to a patient worthy, rare disease podcast for all. We are the rare disease advocates, part of the Aicardi Goutieres Syndrome Advocacy Association (AGSAA). This non-profit works to improve the lives of individuals and families living with Aicardi-Goutieres Syndrome (AGS). We'll regularly invite families, scientists, therapists, experts, clinicians, etc for short conversations about topics relevant to the AGS community. #raredisease #aicardigoutieres #disabilityawareness
Episodes
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Designing Accessibility: How an Architect Mom Built a Beginner’s Guide for Rare Disease Caregivers
When an architect’s life took an unexpected turn with her daughter’s rare disease diagnosis, she combined her professional expertise and caregiving journey to create a Beginner’s Guide to Accessible Home Design. In this episode of The Rare Advocates, she shares how her experience as a mom and...
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Breaking Barriers: A Mother's Journey to Inclusive Playgrounds and Disability Advocacy
Join us as we delve into the inspiring journey of Stephanie, a devoted mother and caregiver, as she shares her experiences raising a daughter with a rare disease. Discover how Stephanie's passion for inclusivity led her to become a prominent advocate for accessible playgrounds, challenging norms,...
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Navigating Aicardi Goutières Syndrome: A Mother's Journey Through Diagnosis, Care, and Grief
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...
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Bridging Hope: A Pediatric Rare Disease Geneticist's Transition from Clinic to Biotech Frontier
Explore the transformative journey of a Pediatric Rare Disease Geneticist, Cynthia Gubbels, MD, PhD, as they transition from the clinical realm of Boston Children's Hospital to the cutting-edge landscape of biotech innovation. Join us on Rare Advocates as we uncover the passion, perseverance, and...
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Unlocking Insights: Understanding and Awareness on Cerebral/Cortical Visual Impairment (CVI Now)
Join us for an enlightening conversation on Cerebral/Cortical Visual Impairment (CVI) in the context of rare diseases with our special guest, Rachel G. Bennett, the esteemed Director of CVI Now Services at Perkins School of Blind. As we delve into the unique challenges faced by individuals with...
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Guiding Caregivers: Palliative Care & Beyond with Courageous Parents Net | The Rare Advocates Podcast
🌟 Join us for a thought-provoking conversation on The Rare Advocates Podcast, where I sit down with Jennifer Siedman, Director of Community Engagement at Courageous Parents Network (CPN) and NeuroJourney.org. In this episode, we delve into the invaluable resources provided by CPN and…
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Newborn Screening Unveiled: Navigating Leukodystrophies with Lesa Brackbill | The Rare Advocates
👶 Embark on a crucial journey into the world of newborn screening for leukodystrophies with Lesa Brackbill, an expert from the Newborn Screening Network. In this enlightening episode of the Rare Advocates Podcast, we unravel the significance of early detection, explore cutting-edge screening...
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The Rare Advocates Podcast Ep9: Jonah's Story, "See me for me, not my disabilities"
In this episode of the Rare Advocates Podcast, I sit down with Jonah to learn his AGS story. We learn more about when he was diagnosed, what his family went through, and what it is like living with Aicardi Goutieres Syndrome. We talk about the wide spectrum of symptoms, his point of view, and his...
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Special Education 101: What you need to know as a parent and caregiver with Dr. Valerie Burnett, EdD
What is special education? When does special education begin? How does one apply for special education? Can one graduate from special education? In this episode, we sit down with Dr. Valerie Burnett and discuss what all parents need to know about Special Education, from Early Childhood…
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Empowering Caregivers: A Journey of Hope with Lauren Lowery | The Rare Advocates Podcast
🌟 Join us on The Rare Advocates Podcast as we delve into the inspiring journey of Lauren Lowery, a devoted mother navigating the challenges of Aicardi Goutieres Syndrome. In this heartfelt episode, Lauren generously shares her experiences as a caregiver, shedding light on the highs and lows…
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What's Augmentative and Alternative Communication (AAC)? Unlocking Communication: A Journey with AAC
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...
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Trailer: Jonah's Story
In this episode of the Rare Advocates Podcast, I sit down with Jonah to learn his AGS story. We learn more about when he was diagnosed, what his family went through, and what it is like living with Aicardi Goutieres Syndrome. We talk about the wide spectrum of symptoms, his point of view, and his...
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The Rare Advocates Podcast Ep8: Mei's Story by Parent Advocate James
In this episode of the Rare Advocates Podcast, I sit down with James to understand how Mei was diagnosed and what his family went through when Mei wasdiagnosed with Aicardi Goutieres Syndrome. This leukodystrophy has impacted 3 members of the family. We talk about the wide spectrum of symptoms…
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What is Aicardi Goutieres Syndrome with Dr. Santoro, Medical Director of Neuroimmunology Program
What is Aicardi Goutieres Syndrome? What treatment is out there? Meet Dr. Jonathan D. Santoro, MD - Medical Director, Neuroimmunology and Demyelinating Disorders Program and Attending Physician, Division of Neurology at Children's Hospital Los Angeles. Dr Santoro is a pediatric neurologist with...
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A Rare Family's Story by Parent Advocates Camille and Shawn
In this episode of the Rare Advocates Podcast, we talk about how Camille and Shawn's family is impacted by Aicardi Goutieres Syndrome. This leukodystrophy has impacted 3 members of the family. We talk about the wide spectrum of symptoms, how they were diagnosed as well as accessing treatment.…
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Wyatt's Story by Dad Advocate Kyle P.
This week, Dad advocate, Kyle, shares the story of handsome, Wyatt. Things didn't seem as complicated until they finally received Wyatt's diagnosis. With their lives changed by Aicardi-Goutieres Syndrome, they continue to advocate for Wyatt. In this podcast, we will talk about diagnosis…
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Sam's Story by Mom Advocate, Annie
This week, Mom advocate, Annie, shares the story of Sam. Today, Sam is three and he is a super fun and sweet kid, who just started going to preschool thanks to his doctors, parent advocates and being able to receive JAK Inhibitors as part of his treatment. In this podcast, we will share Sam's…
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Auri's Story by Dadvocate Patrick Winters
This week, Dad advocate, Patrick Winters, shares the story of the amazing, astounding Aurelia. Natalie and Patrick had a few kids: Max, Lennox, and Aurelia. Things were going pretty great until a rare disease threw them curveball. With their lives changed by Aicardi-Goutieres Syndrome, they find...
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The Rare Advocates First Episode: We finally met at GLIA 2022
The Rare Advocates, S1 E1: We finally met at GLIA 2022 On today’s episode, our first podcast! Devon, Rafa, and Patrick finally met at the GLIA 2022 conference in Philadelphia (https://theglia.org/2022gliaconference). Patrick gave the opening remarks and welcome at the GLIA Advocacy Workshop, and...
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The Road to JAK Inhibition Treatment
The Rare Advocates, S1 E2: The Road to JAK Inhibition Treatment On today’s episode we’re going to discuss the history of AGS’ only available treatment, JAK inhibition. We’re going to relate our understanding of how we got to our current situation with an imperfect but important treatment that has...
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ABOUT THIS SHOW
Welcome to a patient worthy, rare disease podcast for all. We are the rare disease advocates, part of the Aicardi Goutieres Syndrome Advocacy Association (AGSAA). This non-profit works to improve the lives of individuals and families living with Aicardi-Goutieres Syndrome (AGS). We'll regularly invite families, scientists, therapists, experts, clinicians, etc for short conversations about topics relevant to the AGS community. #raredisease #aicardigoutieres #disabilityawareness
HOSTED BY
Aicardi Goutieres Syndrome Advocacy Association (AGSAA)
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Frequently Asked Questions
How many episodes does The Rare Advocates have?
The Rare Advocates currently has 20 episodes available on PodParley. New episodes are automatically indexed when they're published to the podcast feed.
What is The Rare Advocates about?
Welcome to a patient worthy, rare disease podcast for all. We are the rare disease advocates, part of the Aicardi Goutieres Syndrome Advocacy Association (AGSAA). This non-profit works to improve the lives of individuals and families living with Aicardi-Goutieres Syndrome (AGS). We'll regularly...
How often does The Rare Advocates release new episodes?
The Rare Advocates has 20 episodes. Check the episode list to see recent publication dates and frequency.
Where can I listen to The Rare Advocates?
You can listen to The Rare Advocates on PodParley by clicking any episode. We provide an embedded audio player for direct listening, and you can also subscribe via your preferred podcast app using the RSS feed.
Who hosts The Rare Advocates?
The Rare Advocates is created and hosted by Aicardi Goutieres Syndrome Advocacy Association (AGSAA).
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