AVM Alliance: A Pediatric Stroke Podcast

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 showOur FB Page: https://www.facebook.com/AVMAllianceOur FB Group: https://www.facebook.com/groups/325321586185434Instagram: https://www.instagram.com/avmalliance/Webpage: : https://www.avmalliance.orgTwitter: https://twitter.com/avmawarenessYouTube: https://www.youtube.com/@cureforKylerPersonal Blog: https://www.caringbridge.org/visit/kylerlewisTIKTOK: https://www.tiktok.com/@avmsurvivor

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 showOur FB Page: https://www.facebook.com/AVMAllianceOur FB Group: https://www.facebook.com/groups/325321586185434Instagram: https://www.instagram.com/avmalliance/Webpage: : https://www.avmalliance.orgTwitter: https://twitter.com/avmawarenessYouTube: https://www.youtube.com/@cureforKylerPersonal Blog: https://www.caringbridge.org/visit/kylerlewisTIKTOK: https://www.tiktok.com/@avmsurvivor

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 showOur FB Page: https://www.facebook.com/AVMAllianceOur FB Group: https://www.facebook.com/groups/325321586185434Instagram: https://www.instagram.com/avmalliance/Webpage: : https://www.avmalliance.orgTwitter: https://twitter.com/avmawarenessYouTube: https://www.youtube.com/@cureforKylerPersonal Blog: https://www.caringbridge.org/visit/kylerlewisTIKTOK: https://www.tiktok.com/@avmsurvivor

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 showOur FB Page: https://www.facebook.com/AVMAllianceOur FB Group: https://www.facebook.com/groups/325321586185434Instagram: https://www.instagram.com/avmalliance/Webpage: : https://www.avmalliance.orgTwitter: https://twitter.com/avmawarenessYouTube: https://www.youtube.com/@cureforKylerPersonal Blog: https://www.caringbridge.org/visit/kylerlewisTIKTOK: https://www.tiktok.com/@avmsurvivor

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 showOur FB Page: https://www.facebook.com/AVMAllianceOur FB Group: https://www.facebook.com/groups/325321586185434Instagram: https://www.instagram.com/avmalliance/Webpage: : https://www.avmalliance.orgTwitter: https://twitter.com/avmawarenessYouTube: https://www.youtube.com/@cureforKylerPersonal Blog: https://www.caringbridge.org/visit/kylerlewisTIKTOK: https://www.tiktok.com/@avmsurvivor

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 showOur FB Page: https://www.facebook.com/AVMAllianceOur FB Group: https://www.facebook.com/groups/325321586185434Instagram: https://www.instagram.com/avmalliance/Webpage: : https://www.avmalliance.orgTwitter: https://twitter.com/avmawarenessYouTube: https://www.youtube.com/@cureforKylerPersonal Blog: https://www.caringbridge.org/visit/kylerlewisTIKTOK: https://www.tiktok.com/@avmsurvivor

 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 showOur FB Page: https://www.facebook.com/AVMAllianceOur FB Group: https://www.facebook.com/groups/325321586185434Instagram: https://www.instagram.com/avmalliance/Webpage: : https://www.avmalliance.orgTwitter: https://twitter.com/avmawarenessYouTube: https://www.youtube.com/@cureforKylerPersonal Blog: https://www.caringbridge.org/visit/kylerlewisTIKTOK: https://www.tiktok.com/@avmsurvivor

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 showOur FB Page: https://www.facebook.com/AVMAllianceOur FB Group: https://www.facebook.com/groups/325321586185434Instagram: https://www.instagram.com/avmalliance/Webpage: : https://www.avmalliance.orgTwitter: https://twitter.com/avmawarenessYouTube: https://www.youtube.com/@cureforKylerPersonal Blog: https://www.caringbridge.org/visit/kylerlewisTIKTOK: https://www.tiktok.com/@avmsurvivor

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 showOur FB Page: https://www.facebook.com/AVMAllianceOur FB Group: https://www.facebook.com/groups/325321586185434Instagram: https://www.instagram.com/avmalliance/Webpage: : https://www.avmalliance.orgTwitter: https://twitter.com/avmawarenessYouTube: https://www.youtube.com/@cureforKylerPersonal Blog: https://www.caringbridge.org/visit/kylerlewisTIKTOK: https://www.tiktok.com/@avmsurvivor

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 showOur FB Page: https://www.facebook.com/AVMAllianceOur FB Group: https://www.facebook.com/groups/325321586185434Instagram: https://www.instagram.com/avmalliance/Webpage: : https://www.avmalliance.orgTwitter: https://twitter.com/avmawarenessYouTube: https://www.youtube.com/@cureforKylerPersonal Blog: https://www.caringbridge.org/visit/kylerlewisTIKTOK: https://www.tiktok.com/@avmsurvivor

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 showOur FB Page: https://www.facebook.com/AVMAllianceOur FB Group: https://www.facebook.com/groups/325321586185434Instagram: https://www.instagram.com/avmalliance/Webpage: : https://www.avmalliance.orgTwitter: https://twitter.com/avmawarenessYouTube: https://www.youtube.com/@cureforKylerPersonal Blog: https://www.caringbridge.org/visit/kylerlewisTIKTOK: https://www.tiktok.com/@avmsurvivor

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 showOur FB Page: https://www.facebook.com/AVMAllianceOur FB Group: https://www.facebook.com/groups/325321586185434Instagram: https://www.instagram.com/avmalliance/Webpage: : https://www.avmalliance.orgTwitter: https://twitter.com/avmawarenessYouTube: https://www.youtube.com/@cureforKylerPersonal Blog: https://www.caringbridge.org/visit/kylerlewisTIKTOK: https://www.tiktok.com/@avmsurvivor

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 showOur FB Page: https://www.facebook.com/AVMAllianceOur FB Group: https://www.facebook.com/groups/325321586185434Instagram: https://www.instagram.com/avmalliance/Webpage: : https://www.avmalliance.orgTwitter: https://twitter.com/avmawarenessYouTube: https://www.youtube.com/@cureforKylerPersonal Blog: https://www.caringbridge.org/visit/kylerlewisTIKTOK: https://www.tiktok.com/@avmsurvivor

Today we are going to get caught up on some Awareness Month information and statistics. Our guest on the show is Amy Danner, who is the mother of an AVM Survivor and Epilepsy warrior. We are going to end with a short discussion on the prologue and chapter 1 of our current focus book “Suffer Strong: How to Survive Anything by Redefining Everything" by Katherine and Jay Wolf.Guest Page: https://www.facebook.com/groups/481393609499462Support the showOur FB Page: https://www.facebook.com/AVMAllianceOur FB Group: https://www.facebook.com/groups/325321586185434Instagram: https://www.instagram.com/avmalliance/Webpage: : https://www.avmalliance.orgTwitter: https://twitter.com/avmawarenessYouTube: https://www.youtube.com/@cureforKylerPersonal Blog: https://www.caringbridge.org/visit/kylerlewisTIKTOK: https://www.tiktok.com/@avmsurvivor