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AVM Alliance Podcast

AVM Alliance Podcast

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.

Recent Episodes

April 1, 2024

The Therapy TriFecta

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 excitin…
Feb. 1, 2024

Creed's Story & What Will Never Be: Anticipatory Grief

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. What is anticipatory grief? It is the emotions associated with grief be…
Jan. 8, 2024

SE 2: Episode 4: A Kid Again

Today, I am excited to introduce our listeners to 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 med…
Oct. 1, 2023

SE 2: Episode 3: The Doctor is IN: Therapy for Kids

Happy October to all our listeners. October is Brain AVM Awareness Month. As a reminder, A brain AVM is a tangle of abnormal arteries and veins, that do not have the needed capillaries in between the connections. If you would like more information on Brain AVM’s: AVM Alliance, an official non-profi…
Sept. 1, 2023

SE 2: Episode 2: The Doctor is IN: Medical Terms, Epilepsy & Pediatric Stroke

On this episode, we continue our interview with the director of the pediatric stroke program with McGovern Medical School at UTHealth Houston as we go over questions parents submitted for our medical professional. Today’s episode continues the discussion, diving a bit into epilepsy, EEG’s and strok…
Aug. 1, 2023

SE 2: Episode 1: The Doctor is IN: Brain Vessels, MRI, & CTs Explained

We are beginning season two with a 3 part “The doctor is In” Series going over questions with Dr. Stuart Fraser, the director of the pediatric stroke program with McGovern Medical School at UTHealth Houston. This month’s Part one episode focuses on medical terms parents read on radiology reports an…

Recent Blog Posts

Aug. 17, 2023

What is Constraint-induced Movement Therapy (CIMT)

Constraint-induced movement therapy (CIMT) is a therapeutic approach commonly used for both pediatric and adult patients who have experienced a stroke. In the context of pediatric stroke patients, CIMT aims to improve motor function and mobility in …

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Aug. 6, 2023

AVM Alliance

AVM Alliance is a Non-Profit 501(c)(3) Charity,  created to educate the public about pediatric stroke, show children who have this condition that they are not alone, provide valuable support and information to help families on their journey, …

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July 31, 2023

CaringBridge.org: A Lifeline for Parents Navigating Their Child's Str…

When my child suffered a stroke, the emotional toll was overwhelming. Alongside my concern for my child's well-being, my husband and I found ourselves grappling with the challenge of keeping friends and family informed about the ongoing developments…

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Reviews

AVM podcast review

"It was great. Loved hearing about the service dogs. Raylene is a great host. Enjoyed the guest speakers too."

Bob | Nov. 16, 2022

Finally - something that helps

"I've been looking for a podcast that I can follow to help me learn more about this rare disease. The guests are knowledgable and info is relevant."

HG | Dec. 8, 2022

Amazing Podcast

"I love how Raylene shares information and gets at the heart of real stories that I can truly relate to"

Momof3 | Jan. 27, 2024

Great podcast

"I love the podcasts."

Ashleigh Gertel | Feb. 11, 2024

Valuable Niche Resource

"I think the podcast series offers a valuable and unique/niche resource to those in the AVM community. It provides emotional support with stories of those in similar situations to feel heard/connected…"

Sarah McEvily | March 5, 2024