Best Epidermolysis Bullosa Podcasts (2024)

1
Grief: Exploring the Communication of Emotions with Dr. Nicholas Christakis 59:27

13d ago59:27

59:27

Nicholas A. Christakis, MD, PhD, MPH, professor at Yale University, is a sociologist and physician who conducts research in the areas of social networks and biosocial science. He directs the Human Nature Lab. The author of four books and over 200 articles, Christakis was elected to the Institute of Medicine of the National Academy of Sciences in 20…

1
THIS is what a Support Team looks like! Life Grows Around the Grief: Parents Holding Space for Parents 1:17:50

3M ago1:17:50

1:17:50

"It's not, obviously, the way we would want to meet, but I'm so grateful that we did" - Anne Davis says this in regard to becoming "chosen family" with Kaytlynn and Anthony - parents of Addilynn Grace - who had severe Junctional EB - and passed away on December 22, 2022. Katlynn and Anthony include Addilynn in everything they do. They also do so mu…

1
Looking Back and Looking Foward with Epidermolysis Bullosa | ft. Dr. Peter Marinkovich 59:27

4M ago59:27

59:27

We're grateful to be joined on this episode by Dr. Peter Marinkovich - Associate Professor of Dermatology, a faculty member of the Program in Epithelial Biology and the Stanford Cancer Biology Program. We're taking a deep-dive into the history - as well as the available treatments and current research - of Epidermolysis Bullosa. Dr. Marinkovich has…

1
A New Season: Lasting Legacy, Inspiring Impact! 49:40

4M ago49:40

49:40

Welcome to Season 2 of the Grace, Grief and Grit Podcast! We're proud to kick off this new season with Anne and Joe Davis at the table to discuss the upcoming 3rd Annual Butterfly Ball for EB. On this episode, you'll get to know more about Epidermolysis Bullosa as well as the impact Heroes for Hallie Grace is having - and wants to have within the E…

1
Kids Grief Support, ft. Child Life Specialist Jessica Correnti 53:42

5M ago53:42

53:42

This is a "lean-in" episode with our special guest Jessica Correnti who is a Certified Child-Life Specialist, an author, and the owner of Kids Grief Support. Kids Grief Support is a child life private practice that provides support, consultation, and therapeutic interventions for children and families that are grieving the death of a loved one, cop…

1
Savannah Ghost Pirates - EB Awareness Night is COMING!! 11:23

6M ago11:23

11:23

February 23rd is the NIGHT to shine a LIGHT on EB Awareness with the Savannah Ghost Pirates at Enmarket Arena - it's HEROES FOR HALLIE GRACE night! We're sitting down with Cassie Geer with the Savannah Ghost Pirates to chat about this awesome event. Make sure to tap the links below to purchase your tickets for the game! GET TICKETS TO THE GAME ----…

1
Siblings of EB - The Faces and Hearts of True Support 56:49

7M ago56:49

56:49

A few episodes back we had a chance to sit down and chat with Hodges R. Caldwell Jr. - one of the most dynamic, inspiring individuals you'll ever get to know. Hodges was born in 1979 in Virginia and in his words, "looked pretty normal as a baby". At six-months old, Hodges developed a blister on his right side. Even though doctors told Hodges' mom t…

1
Meeting the Heroes Building Therapies for Genetic Diseases 46:14

7M ago46:14

46:14

Matthew Gantz is President and Chief Executive Officer of Castle Creek Biosciences, Inc., and he is our guest on this amazingly informative episode. Matt is an accomplished life sciences executive with more than 25 years of experience in the specialty biopharmaceutical and medical device industries. He shares his perspective about the work and rese…

1
Perfection of Imperfection | ft. Hodges R. Caldwell, Jr. 1:16:05

7M ago1:16:05

1:16:05

Meet Hodges R. Caldwell Jr. - one of the most dynamic, inspiring individuals you'll ever get to know. Hodges was born in 1979 in Virginia and in his words, "looked pretty normal as a baby". At six-months old, Hodges developed a blister on his right side. Even though doctors told Hodges' mom that it would go away, it never did. It actually got bigge…

1
Wind to Fly Higher 24:53

8M ago24:53

24:53

What a beautiful time of the year to talk about giving the gift of support. Anne and Joe Davis are taking a moment to focus on the conversation around the needs within the EB community and the growth of this nonprofit organization. There are so many ways to champion the work including: podcast sponsorship (by season or by episode), partnerships at …

1
The Journey of Hope and Connection 38:55

8M ago38:55

38:55

Welcome to a compelling episode that takes you on an inspiring journey with Joe and Anne Davis as they passionately support the research of finding treatments and a cure for Epidermolysis Bullosa (EB). Join us on a whirlwind tour of two recent benefits - EB Research Partnership in Seattle and debra of America in Atlanta. Tune in to explore the prof…

1
The Mom Episode 55:24

9M ago55:24

55:24

It's Mom's turn! We're sitting down with Anne Davis, the mother of Hallie Grace, a beautiful baby girl who battled a rare and devastating condition called Junctional Epidermolysis Bullosa (JEB). Anne is sharing her deepest thoughts, struggles, milestones, ups, downs, joys and worries with us on this emotional episode. She also details the challenge…

1
The Dad Episode 56:34

1y ago56:34

56:34

On this emotionally charged episode, we have the privilege of sitting down with Joe Davis, the father of Hallie Grace, a beautiful baby girl who battled a rare and devastating condition called Junctional Epidermolysis Bullosa (JEB). Join us as we delve into Joe's personal journey and gain invaluable insights into his experience as a father to a chi…

1
Once Upon a Ball with Cindy Brown 31:31

1y ago31:31

31:31

In this episode, Cindy Brown of All About You Entertainment joins us to share the heartwarming story of how she and Anne, Hallie Grace’s mother, crossed paths in the most unexpected way. Cindy and Anne unite with Savannah’s community to bring their dream to life—the first annual Butterfly Ball. As they dive headfirst into planning the event, Cindy …

1
The Day Hallie Grace Met Hallie Grace 42:09

1y ago42:09

42:09

In this episode, we explore the serendipitous meeting between Anne, Hallie Grace's mother, and the talented singer-songwriter who shares the same name - Hallie Grace. As they discuss the creation of the song, both Anne and Hallie express their profound gratitude and admiration for each other. The song serves as a tribute to Hallie Grace and all chi…

1
Hallie Grace’s Story: The Journey of Love, Hope, and Resilience 55:34

1y ago55:34

55:34

In the inaugural episode of the Grace, Grief and Grit Podcast, we dive into the heartbreaking yet inspiring story of Hallie Grace, a young warrior who battled Junctional Epidermolysis Bullosa (JEB). Epidermolysis Bullosa (EB), often referred to as the "worst disease you've never heard of," affects 200,000 families annually, causing severe skin frag…

1
The Anti-Hippie Homeschooling Pod 32:00

3+ y ago32:00

32:00

It's incredible to think about what you can do to protect your child. This episode is about four families that came together to start their own school. They hired a teacher, set up some ground rules and then crossed their fingers and hoped for the best. So far, it's been the best thing we have ever done. My child is immunocompromised and also has a…

1
Siblings, Empathy and Protection 21:08

3+ y ago21:08

21:08

What is it like to be a sibling of a child with special needs? How do you teach empathy to a kid who consistantly seeks out the laugh from his classmates? Empathy is not somthing that is taught in one class and forgotten about. Empathy is something every parent needs to teach daily. Today I take a look at my youngest son and some of the sacrifices …

1
Epidermolysis Bullosa with Liz Trinnear, Bullying, Diagnosis and her Success 25:35

3+ y ago25:35

25:35

My guest this week is Liz Trinnear, a TV host known to millions across Canada. She is gorgeous, confident and talented and yet she has been suffering from a rare skin codition called Epidermolysis bullosa (EB). Liz talks about growing up with the condition, the diagnosis and finding a cure. We discuss bullying, oversharing and how she has found con…

1
NICU, Premature Babies , Pneumonia and The Baby Cuddler! 25:05

3+ y ago25:05

25:05

Living in the NICU with a child who has pneumonia, reflux, heart issues such as bradycardia, and other stresses can feel impossible. I talk about my experience with my son Cole who has sotos syndrome. I also interview a baby cuddler who saved me from insanity and we speak to the moms who have premature babies. This is an incredibly emotional episod…

1
Can You Cure The Disease 27:18

3+ y ago27:18

27:18

In this weeks episode we talk to one family who is on a mission to find a cure for their boy Michael. He was diagnosed a hereditary spastic paraplegia type 50, otherwise known as SPG50. Children afflicted with this genetic disorder present with a variety of symptoms, including global developmental delay, microcephaly, seizures, malformation of the …

1
Infant Reflux. Someone Please Help. 27:32

3+ y ago27:32

27:32

Today I speak about my son’s experience with Gerd. Reflux almost tore my family apart. Today I bring on Dr. Jeffrey Phillips to speak about reflux and the medicine needed to combat this horrible time in a babies life. I also have Laura Heller Bennett who is a mom who also suffered through gerd with an infant. She eneded up starting her own facebook…

1
Anxiety In Children 22:49

3+ y ago22:49

22:49

I'm a parent who has a child with Sotos Syndrome and I'm finding ways to help him through his anxiety. In this episode we talk about ADHD, Sotos Syndrome, Sensory Issues, Speech delay, teeth issues and anxiety attacks. I tell you what has helped and what has not.By Josie Dye

1
THE PAST AND FUTURE. SOTOS SYNDROME 16:20

3+ y ago16:20

16:20

I recorded this first podcast back in 2018 when my first born was only four years old. Back then I was too nervous to post it online. Today I'm proud of my boy, I'm proud of what my family has accomplished and I feel so grateful to have this outlet.By Josie Dye

1
Dealing with Anemia with Epidermolysis Bullosa 18:00

7+ y ago18:00

18:00

Dealing with Anemia with Epidermolysis Bullosa - A general and personal experience with the Recessive Dystrophic formBy Silvia Corradin

1
Lots of Information about Epidermolysis Bullosa 29:00

8y ago29:00

29:00

Lots of Information about Epidermolysis Bullosa from the ebinfoworld.com websiteBy Silvia Corradin

1
Special Guest Dennis Vannasse Talks about his EB & Special Need Children Books 27:00

8y ago27:00

27:00

Dennis Vanasse is the author of several children's books, including "Everyone Belongs," which is about a young boy who has Epidermolysis Bullosa. Dennis' passion is working with special needs children. His children's books help children deal with major life obstacles. All of the books promote awareness which leads to acceptance. Dennis is currently…

1
Epidermolysis Bullosa Explained in Layman's Terms 24:00

8+ y ago24:00

24:00

Epidermolysis Bullosa is a rare genetic skin condition-not only it's rare so people in general are not aware of it, the way it manifests itself and how it's inherited is very confusing. In this Podcast I will attempt at explaining EB in the most layman's terms. I did the research for this particular podcast a year ago and published as a blog for re…

1
Special Guest Francesca Tenconi Talks About Camp Wonder & the CSDF 28:00

8+ y ago28:00

28:00

In 1996, Francesca Tenconi was diagnosed with Pemphigus Foliaceous, a life-threatening auto-immune based skin disease. She and the other children she met while receiving medical care felt isolated and had no organization focusing on the unique challenges faced by children with such visual diseases. On her 16th birthday in 2000, Tenconi established …

1
Special Guest Kenny Breaux talks about his son's EB Awareness efforts 27:00

8+ y ago27:00

27:00

Kenny Breaux's son Davion has Recessive Dystrophic EB. Davion, AKA, "D-Money," is dancing to a style of music called dubstep he taught himself by watching YouTube videos. But, Davion isn't just dancing for fun, he's raising awareness for EB, or Epidermolysis Bullosa. Kenneth and his son call themselves "Dubsteps Underground, the Mob." Davion has ta…

1
Special Guest Jodi Champagne Talks about her EB Awareness & Veterans Projects 29:00

8+ y ago29:00

29:00

Photographer Jodi Champagne lives in Palmdale, California, and her goal is to tell a story, raise awareness, make a difference. She has traveled worldwide to capture humanity with compassion and heart. Her photographs have appeared in National Geographic and Sports Illustrated. Champagne's first book, "Courage Under Wraps," was a day-in-the-life po…

1
Frequently Asked Questions about Epidermolysis Bullosa Answered 30:00

8+ y ago30:00

30:00

Epidermolysis Bullosa is a rare genetic skin disorder. One thing to describe its rareness is that a doctor or a nurse can be working a lifetime and never bump into this condition. Because of this, there is a lot unknown about the condition and most Doctors are unfamiliar with the condition. I will try to answer some of the most common questions reg…

1
Special Guest Christie Zink Talks about her EB Awareness & Research Efforts 28:00

9y ago28:00

28:00

In honor of EB Awareness week today we'll be joined by Christie Zink, founder of "I Refuse EB" and her efforts to raise Awareness and funds to find a cure for Epidermolysis Bullosa. irefuseEB.org was launched in 2012 to help raise awareness for EB, promote advocacy and support the research efforts taking place at the University of Minnesota by Dr. …

1
Special Guest Jennifer (Lyric) Bolles talks about Life with EB 29:00

9y ago29:00

29:00

About Jennifer in her own words: My name is Jennifer (Lyric) Bolles. I was born in FL and have lived in many different states throughout my life. Currently, and indefinitely, I am in Cincinnati, OH. I moved here almost 6 years ago for the EB drs at Cincinnati Children's Hospital and Medical Center's (CCHMC) EB center. My health was drastically suff…

1
Special Guest Jessica Kenley, talks about EB and her books 31:00

9y ago31:00

31:00

Jessica Kenley was born in 1981 in Buffalo, NY. She lost two of her children, Ethan Tyler and Kaylee Marie, to the Junctional-Herlitz subtype of Epidermolysis Bullosa during their infancy. She is a licensed veterinary technician and has since had 3 healthy children. She wrote the book "Kidowed" to describe the struggles, sorrows, and triumphs of he…

1
Raising Epidermolysis Bullosa Awareness with my book Butterfly Child 26:00

9y ago26:00

26:00

The Host of the Podcast Silvia Corradin talks about her book "Butterfly Child: A Mother's Journey", her other books, websites etc. Just before her 30th Birthday, Silvia found out she was pregnant with her first baby, which was stillborn at full term on March 1, 1995. After a miscarriage she had Nicky, diagnosed shortly after birth with Recessive Dy…

1
Special Guest Derra Nicole Sabo, talks about having EB and her books 27:00

9y ago27:00

27:00

Special guest Derra Nicole Sabo is 30 years old and lives in Apple Valley, California. She was diagnosed at birth with Recessive Dystrophic Epidermolysis Bullosa. She loves to write and has published a few books about her life. Join us as she talks about her life, living with EB! In her own words: "I may have bandages on my legs and occasionally on…

1
Special Guest Heather Fullmer, talks about being an EB mom & the EBRP 23:00

9y ago23:00

23:00

Special Guest Heather Fullmer talks to us today about being an EB mom and shares about what it means to her to be one of the founders of the EB Research Partnership. http://ebresearch.org/By Silvia Corradin

1
Special Guest Lorraine Montello, talks about being an EB mom & Montello Foods 30:00

9+ y ago30:00

30:00

Special Guest Lorraine Montello talks to us today about being an EB mom and shares details about her business venture, Montello Fine Foods, which she started with her son Garrett. https://www.montellooliveoil.com/By Silvia Corradin

1
What is Butterfly Talk? 15:00

9+ y ago15:00

15:00

A quick podcast to test the waters, explaining why I decided to start this and what Epidermolysis Bullosa is in general and what my son goes through on a daily basis. My son Nicky has the Recessive Dystrophic form of EB. This blog talk radio podcast will feature guests and will be a permanent part of the ebinfoworld.com website. I start this podcas…

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Epidermolysis Bullosa Podcasts

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