In this episode of the Grace Grief and Grit podcast, hosts Dee Daniels and Ann and Joe Davis sit down with Michael Hund, the CEO of EB Research Partnership (EBRP).

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Michael shares the mission of EBRP, which is the largest global organization dedicated to treating and curing epidermolysis bullosa (EB). They discuss Michael's journey in joining EBRP in 2017, the learning experiences along the way, and the transformative impact of his work.

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Michael emphasizes the importance of hope in the EB community and highlights the broad range of ongoing research projects aimed at treating various subtypes of EB. The conversation wraps up with a call to action for listeners to get involved and support the EB community in any way they can.

Thank you for listening!

Learn more about EB and the voices in this episode:

Meet Michael Hund and LEARN MORE about EBRP

Tap HERE to connect with Hallie's Story

EB in depth

Meet the family behind Heroes for Hallie Grace

Donate and Join the Fight

Proudly hosted and produced by Dee Daniels Media

Meet Lyle Dillie! For dependable photography and videography services that offer quality outcomes with professionalism and attention to detail, your search ends here. We're so thankful to Lyle for providing top-notch videography services for the 3rd Annual Hallie Grace Memorial Ball for EB.

Lyle's expertise lies in Portrait, Nature, and Commercial Photography. He strives to create a comfortable atmosphere to naturally capture people's interactions. Additionally, he is passionate about nature photography, aiming to encapsulate Georgia's scenic beauty during each of the four seasons.

Thank you for listening!

Learn more about EB and the voices in this episode:

Meet Lyle Dillie

Tap HERE to connect with Hallie's Story

EB in depth

Meet the family behind Heroes for Hallie Grace

Donate and Join the Fight

Proudly hosted and produced by Dee Daniels Media

Anne and Joe Davis are here to celebrate the success of the 3rd Annual Hallie Grace Memorial Ball for EB!

First - a BIG THANK YOU to all who were able to attend, volunteer, or support in any way. We did reach our financial support goals for the ball!! Secondly, we continue to evolve and grow as an organization. This year we saw firsthand our vision of "more connection" come to the surface.

Hallie Grace Davis is a beautiful soul that continues to create an impact on our world - and certainly within the EB community. It's not too early for you to be a part of the next ball, as well as help fund the important research that is going on right now for more treatments and a cure.

Thank you for listening!

Learn more about EB and the voices in this episode:

Tap HERE to connect with Hallie's Story

EB in depth

Meet the family behind Heroes for Hallie Grace

Donate and Join the Fight

Proudly hosted and produced by Dee Daniels Media

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 2006 and was made a Fellow of the American Association for the Advancement of Science in 2010 and a Fellow of the American Academy of Arts and Sciences in 2017.

On this episode we are talking to Nicholas about his book, "BLUEPRINT: The Evolutionary Origins of a Good Society". In Blueprint, he introduces the compelling idea that our genes affect not only our bodies and behaviors, but also the ways in which we make societies, ones that are surprisingly similar worldwide.

He brings some impactful questions related to grief to the table, like: Why do we have this capacity for grief? Why is it helpful for us as humans to have the experience of the emotions around grief?

"Emotions are a very primitive form of communication that far preceded our capacity for language - it's a more sophisticated type of communication."

Thank you for listening!

Learn more about EB and the voices in this episode:

Meet Dr. Nicholas Christakis

Learn more about the book "Blueprint: The Evolutionary Origins of a Good Society"

EB in depth

Meet the family behind Heroes for Hallie Grace

Donate and Join the Fight

Proudly hosted and produced by Dee Daniels Media

"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 much to raise awareness about Epidermolysis Bullosa. Both families take much needed time in this episode to hold space for the grief journey and share stories about their beautiful "butterfly" children.

Anthony says, "looking back - we were so worried about taking care of her - we didn't realize she was the one taking care of us".

Thank you for listening!

Learn more about EB and the voices in this episode:

EB in depth

Meet the family behind Heroes for Hallie Grace

BUY YOUR TICKETS to the 3rd Annual Butterfly Ball

Donate and Join the Fight

Proudly hosted and produced by Dee Daniels Media

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 an interest in inflammatory skin disease and is Director of the Stanford Bullous Disease and Psoriasis Clinics as well as an attending dermatologist at the VA Palo Alto Medical Center. Dr. Marinkovich’s research focuses on pathogenesis and therapy of epidermolysis bullosa, autoimmune blistering diseases, psoriasis and skin cancer.

Thank you for listening!

Learn more about EB and the voices in this episode:

EB in depth

Meet Dr. Peter Marinkovich

Meet the family behind Heroes for Hallie Grace

BUY YOUR TICKETS to the 3rd Annual Butterfly Ball

Donate and Join the Fight

Proudly hosted and produced by Dee Daniels Media

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 EB community.

As we continue to honor the life and legacy of Hallie Grace Davis, we also look towards the future - and we see the needs in front of us. We see families in need of comfort, education, and support. We see the need for funding more research that will result in more therapies to treat EB - and one day a cure!

You can help by joining us at the upcoming Butterfly Ball - June 7, 2024 at 6pm at Savannah Station. Get your tickets now! 3rd Annual Butterfly Ball for EB - Get tickets here!

Thank you for listening!

Learn more about EB and the voices in this episode:

EB in depth

Meet the family behind Heroes for Hallie Grace

Donate and Join the Fight

Proudly hosted and produced by Dee Daniels Media

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, coping with a new diagnosis, or going through a major life transition. Kids Grief Support works with caregivers, children, and teens to support them through these life stressors and tragedies. Kids Grief Support offers in person and telehealth virtual services.

Jessica leaves us with an open door to not only feel all of our emotions, but she also shows us some very valuable tools we can all use to navigate the journey.

Learn more about the voices in this episode:

Learn more about Kids Grief Support

Resources & Children's Grief Books

Heroes for Hallie Grace, Inc.

Proudly hosted and produced by Dee Daniels Media