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AVM Alliance Podcast
AVM Alliance Podcast episodes
- 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 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 InformationSupport 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/avmawareness22 min - 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. 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/creedsjourneySupport 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/avmawareness21 min - A Kid Again
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 BookSupport 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/avmawareness18 min - The Doctor is IN #3: 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-profit, now has its own website www.avmalliance.org. On it you will find lots of information as well as personal stories. Last month’s Part two episode started with terms found on radiology tests doctor’s order and dove a bit into epilepsy, EEG’s and stroke in infants. Today’s episode will end the series with questions about stem cells and other therapies and programs for kids who have suffered a stroke. We will end today's podcast with a "Things to Think About” takeaway lesson from a special children’s 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/avmawareness20 min - The Doctor is IN #2: 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 stroke in infants. Each episode for this season ends with a focus on a special children’s book with a "Things to Think About” takeaway lesson. The focus of this month's "Things to Think About" is based on the Children's Book “The Boy, The Mole the Fox and the Horse” a fabulous book of wisdom written by Charlie Mackesy.
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/avmawareness22 min - The Doctor is IN #1: 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 and goes into more detail about the different radiology tests doctor’s order as well as the major blood vessels of the brain. Each episode for this season will end with a focus on a special children’s book with a "Things to Think About” takeaway lesson. This month's book is "Maybe" by Kobi Yamada.
Guest Website LinkSupport 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/avmawareness18 min - Against the Odds
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 going over our last chapter of our focus book, Suffer strong where Jay talks about "The Unknown" and we learn about the importance of hope when suffering and finding bravery to illuminate the darkness and uncover the treasures hidden there.
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/avmawareness22 min - The Kailee Mills FoundationIn 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 Strong, noting world is missing something valuable if people are not able to recognize and use their talents and gifts.
Article Mentioned: https://newsroom.heart.org/news/in-first-in-utero-brain-surgery-doctors-eliminated-symptoms-of-dangerous-condition?fbclid=IwAR3kfAUdMMk4MaBAoUxVSUjXmC6h4lraG6bzUsIeS5bxe5KxD2Sy9TYovdE
Guest Website: https://www.kaileemillsfoundation.org/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/avmawareness22 min - Scars & Healing
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. She has made it her mission to share information to help parents achieve the best possible outcome for their children.
In Chapter 10 of our focus book, Suffer Strong we discuss the need to redefine healing and the truth about our scars.
Guest Youtube: https://www.youtube.com/@pediatricstrokeandbraininjurySupport 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/avmawareness19 min - It's Not All in My Head: An HHT Story
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 symptoms that don't make sense. The podcast ends with lessons learned from Chapter 9 of our current focus book Suffer Strong: written by Katherine and Jay Wolf.
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/avmawareness21 min
About AVM Alliance Podcast
From the publisher's feed
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.