AVM Alliance Podcast

Raylene Lewis

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

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 showWebpage: https://www.avmalliance.orgGo Fund Me: https://www.gofundme.com/f/avmallianceOur FB Page: https://www.facebook.com/AVMAllianceOur FB Group: https://www.facebook.com/groups/325321586185434Instagram: https://www.instagram.com/avmalliance/TikTok: https://www.tiktok.com/@avmallianceYouTube: https://www.youtube.com/@avmalliancePersonal Blog: https://www.caringbridge.org/visit/kylerlewisTwitter: https://twitter.com/avmawareness

Episodes

The Therapy Trifecta

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 showWebpage: https://www.avmalliance.orgGo Fund Me: https://www.gofundme.com/f/avmallianceOur FB Page: https://www.facebook.com/AVMAllianceOur FB Group: https://www.facebook.com/groups/325321586185434Instagram: https://www.instagram.com/avmalliance/TikTok: https://www.tiktok.com/@avmallianceYouTube: https://www.youtube.com/@avmalliancePersonal Blog: https://www.caringbridge.org/visit/kylerlewisTwitter: https://twitter.com/avmawareness

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

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 showWebpage: https://www.avmalliance.orgGo Fund Me: https://www.gofundme.com/f/avmallianceOur FB Page: https://www.facebook.com/AVMAllianceOur FB Group: https://www.facebook.com/groups/325321586185434Instagram: https://www.instagram.com/avmalliance/TikTok: https://www.tiktok.com/@avmallianceYouTube: https://www.youtube.com/@avmalliancePersonal Blog: https://www.caringbridge.org/visit/kylerlewisTwitter: https://twitter.com/avmawareness

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 showWebpage: https://www.avmalliance.orgGo Fund Me: https://www.gofundme.com/f/avmallianceOur FB Page: https://www.facebook.com/AVMAllianceOur FB Group: https://www.facebook.com/groups/325321586185434Instagram: https://www.instagram.com/avmalliance/TikTok: https://www.tiktok.com/@avmallianceYouTube: https://www.youtube.com/@avmalliancePersonal Blog: https://www.caringbridge.org/visit/kylerlewisTwitter: https://twitter.com/avmawareness

The Doctor is IN #3: Therapy for Kids

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 showWebpage: https://www.avmalliance.orgGo Fund Me: https://www.gofundme.com/f/avmallianceOur FB Page: https://www.facebook.com/AVMAllianceOur FB Group: https://www.facebook.com/groups/325321586185434Instagram: https://www.instagram.com/avmalliance/TikTok: https://www.tiktok.com/@avmallianceYouTube: https://www.youtube.com/@avmalliancePersonal Blog: https://www.caringbridge.org/visit/kylerlewisTwitter: https://twitter.com/avmawareness

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

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 showWebpage: https://www.avmalliance.orgGo Fund Me: https://www.gofundme.com/f/avmallianceOur FB Page: https://www.facebook.com/AVMAllianceOur FB Group: https://www.facebook.com/groups/325321586185434Instagram: https://www.instagram.com/avmalliance/TikTok: https://www.tiktok.com/@avmallianceYouTube: https://www.youtube.com/@avmalliancePersonal Blog: https://www.caringbridge.org/visit/kylerlewisTwitter: https://twitter.com/avmawareness

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

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 showWebpage: https://www.avmalliance.orgGo Fund Me: https://www.gofundme.com/f/avmallianceOur FB Page: https://www.facebook.com/AVMAllianceOur FB Group: https://www.facebook.com/groups/325321586185434Instagram: https://www.instagram.com/avmalliance/TikTok: https://www.tiktok.com/@avmallianceYouTube: https://www.youtube.com/@avmalliancePersonal Blog: https://www.caringbridge.org/visit/kylerlewisTwitter: https://twitter.com/avmawareness

Against the Odds

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 showWebpage: https://www.avmalliance.orgGo Fund Me: https://www.gofundme.com/f/avmallianceOur FB Page: https://www.facebook.com/AVMAllianceOur FB Group: https://www.facebook.com/groups/325321586185434Instagram: https://www.instagram.com/avmalliance/TikTok: https://www.tiktok.com/@avmallianceYouTube: https://www.youtube.com/@avmalliancePersonal Blog: https://www.caringbridge.org/visit/kylerlewisTwitter: https://twitter.com/avmawareness

The Kailee Mills Foundation

The Kailee Mills Foundation

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 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=IwAR3kfAUdMMk4MaBAoUxVSUjXmC6h4lraG6bzUsIeS5bxe5KxD2Sy9TYovdEGuest Website: https://www.kaileemillsfoundation.org/Support the showWebpage: https://www.avmalliance.orgGo Fund Me: https://www.gofundme.com/f/avmallianceOur FB Page: https://www.facebook.com/AVMAllianceOur FB Group: https://www.facebook.com/groups/325321586185434Instagram: https://www.instagram.com/avmalliance/TikTok: https://www.tiktok.com/@avmallianceYouTube: https://www.youtube.com/@avmalliancePersonal Blog: https://www.caringbridge.org/visit/kylerlewisTwitter: https://twitter.com/avmawareness

Scars & Healing

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 showWebpage: https://www.avmalliance.orgGo Fund Me: https://www.gofundme.com/f/avmallianceOur FB Page: https://www.facebook.com/AVMAllianceOur FB Group: https://www.facebook.com/groups/325321586185434Instagram: https://www.instagram.com/avmalliance/TikTok: https://www.tiktok.com/@avmallianceYouTube: https://www.youtube.com/@avmalliancePersonal Blog: https://www.caringbridge.org/visit/kylerlewisTwitter: https://twitter.com/avmawareness

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

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 showWebpage: https://www.avmalliance.orgGo Fund Me: https://www.gofundme.com/f/avmallianceOur FB Page: https://www.facebook.com/AVMAllianceOur FB Group: https://www.facebook.com/groups/325321586185434Instagram: https://www.instagram.com/avmalliance/TikTok: https://www.tiktok.com/@avmallianceYouTube: https://www.youtube.com/@avmalliancePersonal Blog: https://www.caringbridge.org/visit/kylerlewisTwitter: https://twitter.com/avmawareness

Icing Smiles: Baking a Difference

Icing Smiles: Baking a Difference

This morning we are starting with a Brain News medical study. A study with the University of Cincinnati will examine the effectiveness of a stroke treatment for patients with a pre-stroke disability, one of the first studies to focus on this population. Our guest today is a spokesman from the sweetest non-profit I know, Icing Smiles, an organization who is baking a difference for children dealing with a difficult medical diagnosis. We will end the podcast with a discussion on the need to redefine beauty from Ch 7, of our focus book, Suffer Strong. New Stroke StudyIcing Smiles: Baking a DifferenceSupport the showWebpage: https://www.avmalliance.orgGo Fund Me: https://www.gofundme.com/f/avmallianceOur FB Page: https://www.facebook.com/AVMAllianceOur FB Group: https://www.facebook.com/groups/325321586185434Instagram: https://www.instagram.com/avmalliance/TikTok: https://www.tiktok.com/@avmallianceYouTube: https://www.youtube.com/@avmalliancePersonal Blog: https://www.caringbridge.org/visit/kylerlewisTwitter: https://twitter.com/avmawareness

Don't Dis My Ability

Don't Dis My Ability

In Brain News we go over two published studies from Stanford University involving Stem Cell treatment for Stroke survivors. Our guest today is Jonathan Slifka who was born with spina bifida who discusses the importance of working together to make positive changes in what you want to see happen in life. We end with a discussion on redefining failure in Ch. 6 of our focus book, Suffer Strong, where Jay points out how great people are at projecting an image to the public that is often completely different from how they actually feel. Research Study 1 Research Study 2 Guest: Jonathan SlifkaTwitter: @JonathanSlifka Insta: Inspireujs -----Support the showWebpage: https://www.avmalliance.orgGo Fund Me: https://www.gofundme.com/f/avmallianceOur FB Page: https://www.facebook.com/AVMAllianceOur FB Group: https://www.facebook.com/groups/325321586185434Instagram: https://www.instagram.com/avmalliance/TikTok: https://www.tiktok.com/@avmallianceYouTube: https://www.youtube.com/@avmalliancePersonal Blog: https://www.caringbridge.org/visit/kylerlewisTwitter: https://twitter.com/avmawareness

The Bright Side

The Bright Side

In Brain News: Survivor, Malori Rodgers, just released her book “A Stroke a Heaven” which talks about her personal journey after a traumatic brain injury. Our guest today is Heather Golladay, who talks about the importance for looking at the bright side of things. Her husband suffered an ischemic stroke and she is the graphic arts designer for AVM Alliance and the creator of our butterfly pig and each week's art work. We end today with Chapter 5 of our focus book Suffer Strong with a discussion on redefining loss and opening our hands to the future.Information: KCBD News Article on Malori RodgersBook: A Stroke of HeavenSupport the showWebpage: https://www.avmalliance.orgGo Fund Me: https://www.gofundme.com/f/avmallianceOur FB Page: https://www.facebook.com/AVMAllianceOur FB Group: https://www.facebook.com/groups/325321586185434Instagram: https://www.instagram.com/avmalliance/TikTok: https://www.tiktok.com/@avmallianceYouTube: https://www.youtube.com/@avmalliancePersonal Blog: https://www.caringbridge.org/visit/kylerlewisTwitter: https://twitter.com/avmawareness

Today's episode includes a discussion on yesterday's MSN published article: “Doctors dismissed these 3 young people's symptoms as migraines or drug-related — but they were really having strokes.” We welcome guest Dina Chon with the Aneurysm and AVM Foundation and end with a short discussion on pain, perspective and PTSD as we finish chapter 4 of our focus book "Suffer Strong" by Kathrine and Jay Wolf.PSA Find Your Lifeline with TAAF: https://youtu.be/v0yhpua-078The Aneurysm and AVM Foundation: https://taafonline.org/Support the showWebpage: https://www.avmalliance.orgGo Fund Me: https://www.gofundme.com/f/avmallianceOur FB Page: https://www.facebook.com/AVMAllianceOur FB Group: https://www.facebook.com/groups/325321586185434Instagram: https://www.instagram.com/avmalliance/TikTok: https://www.tiktok.com/@avmallianceYouTube: https://www.youtube.com/@avmalliancePersonal Blog: https://www.caringbridge.org/visit/kylerlewisTwitter: https://twitter.com/avmawareness

The Bare Minimum

The Bare Minimum

This week, the short film Time Bomb was released to showcase the real life challenges of a rare disease diagnosis and was created with the help of The Aneurysm and AVM Foundation. With the holiday’s approaching, decadent treats and delicious food on the horizon it is no wonder heath and weight loss become added priorities on many a new year resolution list. How to put in place something that sticks and works can be very elusive. Sometimes when parents are in survival mode, health and fitness is at the bottom of all lists— even new years resolutions. To help with a few tricks to get us started for the holidays and new year, I have health & fitness coach Elizabeth visiting with us today. And in Chapter 4 of our focus book, Suffer Strong we discuss the philosophy Japanese Kintsugi pottery.Time Bomb: https://youtu.be/KwaLIsfNsSoInsta: https://www.instagram.com/wannabefitnessforever/Support the showWebpage: https://www.avmalliance.orgGo Fund Me: https://www.gofundme.com/f/avmallianceOur FB Page: https://www.facebook.com/AVMAllianceOur FB Group: https://www.facebook.com/groups/325321586185434Instagram: https://www.instagram.com/avmalliance/TikTok: https://www.tiktok.com/@avmallianceYouTube: https://www.youtube.com/@avmalliancePersonal Blog: https://www.caringbridge.org/visit/kylerlewisTwitter: https://twitter.com/avmawareness

Hope for Minds, Help for Dads

Hope for Minds, Help for Dads

In today’s news we will talking about a new youth medial clinic that just opened this past November for children suffering from Cerebral Palsy, Traumatic Brain injury and stroke based on published journal findings on Hyperbaric medicine for brain injuries in children. We will be visiting with Tim Siegal who started Team Luke, Hope for Minds after his son’s tragic golf cart accident. We will end with a short discussion on rebellion and need for celebrations even when suffering from Chapter 3 our current focus book “Suffer Strong” by Katherine and Jay Wolf.Guest's Info: https://www.teamlukehopeforminds.org/Support the showWebpage: https://www.avmalliance.orgGo Fund Me: https://www.gofundme.com/f/avmallianceOur FB Page: https://www.facebook.com/AVMAllianceOur FB Group: https://www.facebook.com/groups/325321586185434Instagram: https://www.instagram.com/avmalliance/TikTok: https://www.tiktok.com/@avmallianceYouTube: https://www.youtube.com/@avmalliancePersonal Blog: https://www.caringbridge.org/visit/kylerlewisTwitter: https://twitter.com/avmawareness

Aneurysms, Support & The JNF

Aneurysms, Support & The JNF

Today we are talking about brain Aneurysms and will be visiting with Natalie Niekro who started the Joe Niekro Foundation after her father’s sudden passing from a ruptured aneurysm. And We will end with a short discussion finishing up Chapter 2 of our current focus book “Suffer Strong” by Katherine and Jay Wolf and, in particular, discuss hope as an anchor in our lives.Guest Website: https://www.joeniekrofoundation.com/Support the showWebpage: https://www.avmalliance.orgGo Fund Me: https://www.gofundme.com/f/avmallianceOur FB Page: https://www.facebook.com/AVMAllianceOur FB Group: https://www.facebook.com/groups/325321586185434Instagram: https://www.instagram.com/avmalliance/TikTok: https://www.tiktok.com/@avmallianceYouTube: https://www.youtube.com/@avmalliancePersonal Blog: https://www.caringbridge.org/visit/kylerlewisTwitter: https://twitter.com/avmawareness

A Decision Tree

A Decision Tree

Today we are going to be talking about the UCSF Pediatric Stroke Research Center and three of their current research projects headed by Dr. Heather Fullerton. We will visit with guest Jennifer Odell whose beautiful son Brayden gained his wings just days after his AVM rupture and learn what is important to families during this difficult time. We will end with a short discussion on part one of Chapter 2 of our current focus book “Suffer Strong” by Katherine and Jay Wolf focusing on the importance of redefining the past to allow peace and eventually healing on the inside.Brayden's Story: https://www.cbc.ca/news/canada/montreal/brayden-odell-avm-sainte-justine-foundation-1.6496942The Family's Website: https://teambrayden.org/Support the showWebpage: https://www.avmalliance.orgGo Fund Me: https://www.gofundme.com/f/avmallianceOur FB Page: https://www.facebook.com/AVMAllianceOur FB Group: https://www.facebook.com/groups/325321586185434Instagram: https://www.instagram.com/avmalliance/TikTok: https://www.tiktok.com/@avmallianceYouTube: https://www.youtube.com/@avmalliancePersonal Blog: https://www.caringbridge.org/visit/kylerlewisTwitter: https://twitter.com/avmawareness

The AVM Research Foundation

The AVM Research Foundation

Today we are going to be talking with guest Sherri Logan who started The AVM Research Foundation with her husband Mark and we will end with a short discussion on the second half of Chapter 1 of our current focus book “Suffer Strong" by Katherine and Jay Wolf. The AVM Research Foundation’s mission is to raise funds for AVM awareness, with their biggest goals to 1) create a way for early detection, and 2) find a safer treatment for those affected by brain AVMs. The Foundation was created after Ryan Logan, who was 11 years old at the time, was told by doctors that no treatments were safe with his complex grade 4 AVM.” The doctors simply told the Logan family to let their son Ryan simply “let him live his life.” A year later, Ryan suffered a brain hemorrhage. Video: https://www.youtube.com/watch?v=kLCJK5X9Om0AVM Research Foundation: https://www.research4ryan.org/ryans-story.htmlSupport the showWebpage: https://www.avmalliance.orgGo Fund Me: https://www.gofundme.com/f/avmallianceOur FB Page: https://www.facebook.com/AVMAllianceOur FB Group: https://www.facebook.com/groups/325321586185434Instagram: https://www.instagram.com/avmalliance/TikTok: https://www.tiktok.com/@avmallianceYouTube: https://www.youtube.com/@avmalliancePersonal Blog: https://www.caringbridge.org/visit/kylerlewisTwitter: https://twitter.com/avmawareness

Service Animals & Opportunity in Limitations

Service Animals & Opportunity in Limitations

Today we are going to be talking about something many parents consider for their child who has a disability: service animals! We are going to go over the general ADA rules as well as the steps to take and things to consider when deciding if a service animal is the right addition for your family. Our guests are Terry and Nancy Cadel who own River’s Edge Dog Academy—a business who has been training service animals for over 35 years, and we will end with a short discussion on the first half of chapter 1 of our current focus book “Suffer Strong: How to Survive Anything by Redefining Everything by Katherine and Jay Wolf. Thank you for joining us. Guest's Website: https://www.riversedgeda.comSupport the showWebpage: https://www.avmalliance.orgGo Fund Me: https://www.gofundme.com/f/avmallianceOur FB Page: https://www.facebook.com/AVMAllianceOur FB Group: https://www.facebook.com/groups/325321586185434Instagram: https://www.instagram.com/avmalliance/TikTok: https://www.tiktok.com/@avmallianceYouTube: https://www.youtube.com/@avmalliancePersonal Blog: https://www.caringbridge.org/visit/kylerlewisTwitter: https://twitter.com/avmawareness