AVM Alliance Podcast copertina

AVM Alliance Podcast

AVM Alliance Podcast

Di: Raylene Lewis
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A proposito di questo titolo

The AVM Alliance Podcast was created for parents who are taking care of a medically complex child including those who have been diagnosed with epilepsy or rare disease. This podcast has a slight focus on pediatric stroke, Brain AVM / Aneurysm (brain vessel disease) and traumatic brain Injury (TBI). The goal is to provide helpful information and remind other parents they are not alone on this difficult journey. Thank you for joining us.

© 2024 AVM Alliance Podcast
Disturbo fisico e malattia Genitorialità e famiglie Igiene e vita sana Relazioni
  • The Therapy Trifecta
    Apr 1 2024

    Welcome to AVM Alliance, where we delve into the world of pediatric stroke and brain disorders with honest conversations and valuable insights for our community. In this episode, host Raylene Lewis shares her experiences from the International Pediatric Stroke Organization 2024 Congress and exciting updates from our AVM Alliance community events. Join us as we explore the transformative power of therapy in pediatric stroke recovery with special guest Anna Haertling Clearman, an occupational therapist from UTHealth. Discover the 'Therapy Trifecta'—occupational therapy, physical therapy, and speech therapy—and learn about cutting-edge treatments and research programs making a difference in pediatric stroke rehabilitation. Whether you're a parent, caregiver, or advocate, this episode offers valuable information and encouragement as we navigate the journey of pediatric stroke together. Remember, you're never alone on this journey.
    Pediatric Stroke Clinic Information

    Support the Show.

    Webpage: https://www.avmalliance.org
    Go Fund Me: https://www.gofundme.com/f/avmalliance
    Our FB Page: https://www.facebook.com/AVMAlliance
    Our FB Group: https://www.facebook.com/groups/325321586185434
    Instagram: https://www.instagram.com/avmalliance/
    TikTok: https://www.tiktok.com/@avmalliance
    YouTube: https://www.youtube.com/@avmalliance
    Personal Blog: https://www.caringbridge.org/visit/kylerlewis
    Twitter: https://twitter.com/avmawareness

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    22 min
  • Creed's Story & What Will Never Be: Anticipatory Grief
    Feb 1 2024

    Creed is missing the majority of his brain. He essentially only has his brain stem and all of his other brain is missing. Doctors deemed her child deemed incompatible with life, but Creed has defied the odds is now 9 years old. Melanie, Creed's mom, shares their story. What is anticipatory grief? It is the emotions associated with grief before the expected loss actually happens. -- Think of it as
    "What will never be."
    Creed's Journey: https://www.facebook.com/creedsjourney

    Support the Show.

    Webpage: https://www.avmalliance.org
    Go Fund Me: https://www.gofundme.com/f/avmalliance
    Our FB Page: https://www.facebook.com/AVMAlliance
    Our FB Group: https://www.facebook.com/groups/325321586185434
    Instagram: https://www.instagram.com/avmalliance/
    TikTok: https://www.tiktok.com/@avmalliance
    YouTube: https://www.youtube.com/@avmalliance
    Personal Blog: https://www.caringbridge.org/visit/kylerlewis
    Twitter: https://twitter.com/avmawareness

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    21 min
  • A Kid Again
    Jan 8 2024

    I am excited to introduce our listeners to Ami Waggoner who has graciously come on today to tell us the story of her medically complex child Luke and Kathy Derr, founder and director of family engagement for the absolutely fabulous organization everyone should know about — A Kid Again created to provide kids with life-threatening conditions and their entire family with the opportunity to forget about the stress that comes with having a child with a medical condition.
    A Kid Again: https://akidagain.org/
    Follow Luke: Luke's Mom's Page
    Book Or So They Thought: Order Book

    Support the Show.

    Webpage: https://www.avmalliance.org
    Go Fund Me: https://www.gofundme.com/f/avmalliance
    Our FB Page: https://www.facebook.com/AVMAlliance
    Our FB Group: https://www.facebook.com/groups/325321586185434
    Instagram: https://www.instagram.com/avmalliance/
    TikTok: https://www.tiktok.com/@avmalliance
    YouTube: https://www.youtube.com/@avmalliance
    Personal Blog: https://www.caringbridge.org/visit/kylerlewis
    Twitter: https://twitter.com/avmawareness

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    18 min
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