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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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Top 10 AVM Alliance Podcast Episodes

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Don't Dis My Ability

AVM Alliance Podcast

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01/12/23 • 22 min

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 Slifka
Twitter: @JonathanSlifka
Insta: Inspireujs
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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/avmawareness

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01/12/23 • 22 min

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The Bright Side

AVM Alliance Podcast

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01/04/23 • 23 min

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 Rodgers
Book: A Stroke of Heaven

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/avmawareness

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01/04/23 • 23 min

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Think TAAF

AVM Alliance Podcast

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12/28/22 • 24 min

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-078
The Aneurysm and AVM Foundation: https://taafonline.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/avmawareness

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12/28/22 • 24 min

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The Bare Minimum

AVM Alliance Podcast

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12/21/22 • 20 min

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/KwaLIsfNsSo
Insta: https://www.instagram.com/wannabefitnessforever/

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/avmawareness

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12/21/22 • 20 min

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Hope for Minds, Help for Dads

AVM Alliance Podcast

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12/14/22 • 17 min

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 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/avmawareness

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12/14/22 • 17 min

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Aneurysms, Support & The JNF

AVM Alliance Podcast

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12/07/22 • 19 min

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 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/avmawareness

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12/07/22 • 19 min

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A Decision Tree

AVM Alliance Podcast

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11/30/22 • 20 min

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-1.6496942
The Family's Website: https://teambrayden.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/avmawareness

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11/30/22 • 20 min

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The AVM Research Foundation

AVM Alliance Podcast

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11/22/22 • 21 min

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=kLCJK5X9Om0
AVM Research Foundation: https://www.research4ryan.org/ryans-story.html

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/avmawareness

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11/22/22 • 21 min

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11/15/22 • 20 min

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.com

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/avmawareness

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11/15/22 • 20 min

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11/08/22 • 20 min

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/481393609499462

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/avmawareness

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11/08/22 • 20 min

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FAQ

How many episodes does AVM Alliance Podcast have?

AVM Alliance Podcast currently has 18 episodes available.

What topics does AVM Alliance Podcast cover?

The podcast is about Health & Fitness, Parenting, Kids & Family and Podcasts.

What is the most popular episode on AVM Alliance Podcast?

The episode title 'Don't Dis My Ability' is the most popular.

What is the average episode length on AVM Alliance Podcast?

The average episode length on AVM Alliance Podcast is 21 minutes.

How often are episodes of AVM Alliance Podcast released?

Episodes of AVM Alliance Podcast are typically released every 8 days, 3 hours.

When was the first episode of AVM Alliance Podcast?

The first episode of AVM Alliance Podcast was released on Nov 8, 2022.

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