AVM Alliance Podcast

Mar 31 2024 1
AVM Alliance Podcast artwork

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.

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The Therapy Trifecta

Mar 31 2024 21 mins  
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 transform

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

Feb 01 2024 20 mins  
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 happe

A Kid Again

Jan 08 2024 17 mins  
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 opport

The Doctor is IN #3: Therapy for Kids

Oct 01 2023 19 mins  
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-profit, now has its own website www.avmalliance.org. On it you will find lots of informa

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

Sep 01 2023 21 mins  
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 stroke in infants. Each episode for this season ends with a focus on a special childre

The Doctor is IN #1: Brain Vessels, MRI, & CTs Explained

Aug 01 2023 17 mins  
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 and goes into more detail about the different radiology tests doctor’s order as

Against the Odds

Jun 27 2023 21 mins  
Today is the end of season one, our 15th episode. We talk about why some parents of children who have suffered a stroke feel like they don't fit in and provide an analogy that hopefully will change that mindset. Our guests today are AVM Brain bleed survivors Kyler Lewis and Ashley Lindsey who talk about what it is like to deal with brain vessel disease. We end the podcast goin

The Kailee Mills Foundation

May 14 2023 21 mins  
In Brain News, researchers have recently performed a successful surgery to repair a Vein of Galen Malformation, in a baby’s brain before birth. This month's interview is with Brianna McCulloch who runs the Kailee Mills Foundation-- a charity on a mission to save lives one seat belt click at a time. The podcast ends with a discussion of Chapter 11 of our focus book, Suffer St

Scars & Healing

Feb 20 2023 18 mins  
A Pediatric ischemic stroke is a type of stroke that occurs when a blockage, such as a blood clot, reduces or completely stops blood flow to a part of the brain. This causes brain cells to be damaged or die, which can cause long-term disabilities. Our guest today, Mara Yale was introduced to the world of pediatric stroke when her 2nd child was diagnosed shortly after their birth. S

It's Not All in My Head: An HHT Story

Feb 07 2023 20 mins  
This podcast starts with a brief explanation of the genetic condition, Hereditary Hemorrhagic Telangiectasia (HHT) and tells the story of Stephany Zumerling who suffered for years without the correct diagnosis. Her medical journey offers lessons we can all learn from and highlights the importance of finding a doctor who takes the time to listen to their patient and investigate symp