In this episode of BARE IT ALL Coffee Talk, we welcome Katie Sclafani, Licensed Clinical Social Worker and Certified Clinical Transplant Social Worker with the Sala Institute for Child & Family Centered Care at NYU Langone’s Hassenfeld Children’s Hospital.
Katie walks us through the invaluable role social workers play in the pediatric liver disease journey — from diagnosis through transplant and every step in between. As part of the care team, social workers help ensure families are informed, connected to resources, and supported as they navigate complex medical decisions and transitions.
Whether you're a caregiver, healthcare provider, or advocate, this conversation offers an important look into how social workers guide and empower families during some of their most challenging moments.
Links for organizations mentioned.
If you or someone you know has experience with biliary atresia and is willing to share your journey publicly to support our initiative, please don't hesitate to contact us at contactus@bareinc.org. Let's amplify our voices and foster understanding together."
Connect with us:
If your child is facing a life-saving liver transplant, please reach out to The Children's Organ Transplant Association, or COTA. The COTA crew looks forward to learning more about your family's Biliary Atresia journey. COTA works with families to lessen the financial burden of a life-saving transplant, and support is provided at absolutely no cost. Please call COTA today at 1-800-366-2682 or visit www.cota.org/getstarted to learn more about how they can help.
Music by Magnetic_Trailer from Pixabay
Listen now on Spotify, Apple Podcasts, or wherever you get your shows.#BiliaryAtresia #KasaiProcedure #MedicalJourney #Parenting #BAREItAll #CoffeeTalk
In this heartfelt special edition, we sit down once again with Rachel Perez for an extraordinary update following her emotional meeting with her donor family — a rare and powerful moment that few get to experience.
Rachel shares her raw, personal reflections from this deeply meaningful encounter, giving listeners an intimate glimpse into a story of life, loss, gratitude, and connection. This episode is more than an update; it’s a reminder of the human stories that live behind every donation and every second chance.
Grab your coffee, your tissues, and join us for a conversation that is as rare as it is unforgettable.
Listen now on all major platforms
This week on BARE It All Coffee Talk, Stephanie sits down with the incredible Rachel, an adult survivor of Biliary Atresia, for a raw, heartfelt, and eye-opening conversation. What is it really like navigating adulthood with a rare pediatric liver disease? Rachel shares her journey, the challenges and triumphs, and what she wishes more people understood.
🌟 Whether you're part of the BA community or just discovering it, this episode is a must-listen.
PLUS: Don’t miss this one — a powerful and riveting update from Rachel drops next week. Trust us, you’ll want to be caught up.
🎧 Grab your coffee and tune in now 🎧
🎧 Season Premiere – BARE It All Coffee Talk ☕
Welcome to a brand-new season of BARE It All Coffee Talk!
We're kicking things off with powerful conversations and exciting updates—we're now streaming on all major podcast platforms and on YouTube!
In this emotional and eye-opening episode, we sit down with Brooks, an adult living with biliary atresia. Brooks shares his deeply personal journey, the medical challenges he's faced, and the mindset that helps him keep moving forward.
Whether you’re navigating a rare condition yourself or just want to hear an incredible story of resilience and hope, this episode is a must-listen.
🔔 Don’t forget to subscribe, rate, and share to help us spread awareness and inspire others.
Topics Covered:
#BAREItAllCoffeeTalk #BiliaryAtresia #PatientStories #PodcastSeasonPremiere #ChronicIllnessAwareness #HealthJourney #Resilience
On this BARE It All Coffee Talk episode, Stephanie sits down with Sarah and Dan to share their journey with Biliary Atresia. They open up about their experience raising a child who’s had a Kasai procedure and offers insight into the emotional and physical challenges of navigating such a medical journey. Tune in to hear about their unique perspectives on this life-changing experience from mom and dad.
If you or someone you know has experience with biliary atresia and is willing to share your journey publicly to support our initiative, don't hesitate to get in touch with us at contactus@bareinc.org. Let's amplify our voices and foster understanding together."
Connect with us:
• Bare Inc.
• Instagram
• Facebook
• YouTube
If your child is facing a life-saving liver transplant, please reach out to The Children's Organ Transplant Association or COTA. The COTA crew looks forward to learning more about your family's Biliary Atresia journey. COTA works with families to lessen the financial burden of a life-saving transplant and support is provided at absolutely no cost. Please call COTA today at 1-800-366-2682 or go to www.cota.org/getstarted to learn more about how they can help.
Music by Magnetic_Trailer from Pixabay
#BiliaryAtresia #KasaiProcedure #MedicalJourney #Parenting #BAREItAll #CoffeeTalk
On this episode of BARE It All Coffee Talk, host Stephanie welcomes her oldest daughter, Alexis. Together, they explore the impact of biliary atresia on siblings and what has helped them cope. The entire family faces the challenges of BA, each in their own way, but, Alexis reflects on how, 11 years after her sister’s diagnosis, she has cherished memories—even amidst the difficulties.
If you or someone you know has experience with biliary atresia and is willing to share your journey publicly to support our initiative, don't hesitate to get in touch with us at contactus@bareinc.org. Let's amplify our voices and foster understanding together."
Connect with us:
If your child is facing a life-saving liver transplant, please reach out to The Children's Organ Transplant Association or COTA. The COTA crew looks forward to learning more about your family's Biliary Atresia journey. COTA works with families to lessen the financial burden of a life-saving transplant and support is provided at absolutely no cost. Please call COTA today at 1-800-366-2682 or go to www.cota.org/getstarted to learn more about how they can help.
Music by Magnetic_Trailer from Pixabay
On this episode of BARE It All Coffee Talk, host Stephanie is joined by Brandi to discuss their journey with Biliary Atresia. They candidly share their experiences, including the challenges and triumphs along the way. If you've faced complications or want to understand this condition better, this is an episode you won't want to miss!
If you or someone you know has experience with biliary atresia and is willing to share your journey publicly to support our initiative, don't hesitate to get in touch with us at contactus@bareinc.org. Let's amplify our voices and foster understanding together."
Connect with us:
• Bare Inc.
• Instagram
• Facebook
• YouTube
If your child is facing a life-saving liver transplant, please reach out to The Children's Organ Transplant Association or COTA. The COTA crew looks forward to learning more about your family's Biliary Atresia journey. COTA works with families to lessen the financial burden of a life-saving transplant and support is provided at absolutely no cost. Please call COTA today at 1-800-366-2682 or go to www.cota.org/getstarted to learn more about how they can help.
Music by Magnetic_Trailer from Pixabay
On this episode of BARE It All Coffee Talk, host Stephanie is joined by President Jen for an insightful discussion about COTA (Children's Organ Transplant Association). They chat with COTA President Rick and two families who have benefited from COTA’s support. Please tune in to hear their personal medical journeys and discover how COTA has made a difference in their lives.
If you or someone you know has experience with biliary atresia and is willing to share your journey publicly to support our initiative, don't hesitate to get in touch with us at contactus@bareinc.org. Let's amplify our voices and foster understanding together."
Connect with us:
• Bare Inc.
• Instagram
• X - Twitter
• Facebook
• YouTube
If your child is facing a life-saving liver transplant, please reach out to The Children's Organ Transplant Association or COTA. The COTA crew looks forward to learning more about your family's Biliary Atresia journey. COTA works with families to lessen the financial burden of a life-saving transplant and support is provided at absolutely no cost. Please call COTA today at 1-800-366-2682 or go to www.cota.org/getstarted to learn more about how they can help.
Music by Magnetic_Trailer from Pixabay
In this episode of BARE It All Coffee Talk, Stephanie sits down with fellow board member Maria to explore the crucial role of advocacy in the biliary atresia journey. Whether you're a parent or a patient, effective advocacy can significantly impact your medical experience. Join us as we share our insights and experiences to support and guide others on their journeys.
The incidence of biliary atresia is approximately one in 10,000 children, with the disease being more common in males and in Asian and African-American newborns. Biliary atresia is not an inherited disease and does not run in families.
Biliary Atresia - UCSF transplant surgeons.
If you or someone you know has experience with biliary atresia and is willing to share your journey publicly to support our initiative, don't hesitate to get in touch with us at contactus@bareinc.org. Let's amplify our voices and foster understanding together."
Music by Magnetic_Trailer from Pixabay
Connect with us:
• Bare Inc.
• Instagram
• X - Twitter
• Facebook
• YouTube
If your child is facing a life-saving liver transplant, please reach out to The Children's Organ Transplant Association or COTA. The COTA crew looks forward to learning more about your family's Biliary Atresia journey. COTA works with families to lessen the financial burden of a life-saving transplant and support is provided at absolutely no cost. Please call COTA today at 1-800-366-2682 or go to www.cota.org/getstarted to learn more about how they can help.
Join us in this emotional episode of BARE It All, Coffee Talk, as we sit down with Aaron to hear his poignant journey with biliary atresia and transplant. Aaron bravely shares the challenges and triumphs of living with biliary atresia as an adult, offering a candid look into his life.
The incidence of biliary atresia is approximately one in 10,000 children, with the disease being more common in males and in Asian and African-American newborns. Biliary atresia is not an inherited disease and does not run in families.
Biliary Atresia - UCSF transplant surgeons.
If you or someone you know has experience with biliary atresia and is willing to share your journey publicly to support our initiative, don't hesitate to get in touch with us at contactus@bareinc.org. Let's amplify our voices and foster understanding together."
Music by Magnetic_Trailer from Pixabay
Connect with us:
• Bare Inc.
• Instagram
• X - Twitter
• Facebook
• YouTube
If your child is facing a life-saving liver transplant, please reach out to The Children's Organ Transplant Association or COTA. The COTA crew looks forward to learning more about your family's Biliary Atresia journey. COTA works with families to lessen the financial burden of a life-saving transplant and support is provided at absolutely no cost. Please call COTA today at 1-800-366-2682 or go to www.cota.org/getstarted to learn more about how they can help.
Join us in this episode of BARE It All, Coffee Talk, as we sit down with Jenna to delve into her son Alex’s journey with biliary atresia and transplant. Jenna bravely shares the challenges and complications Alex faced post-transplant, offering listeners a glimpse into their daily lives and resilience.
The incidence of biliary atresia is approximately one in 10,000 children, with the disease being more common in males and in Asian and African-American newborns. Biliary atresia is not an inherited disease and does not run in families.
Biliary Atresia - UCSF transplant surgeons.
If you or someone you know has experience with biliary atresia and are willing to share your journey publicly to support our initiative, please reach out to us at contactus@bareinc.org. Let's amplify our voices and foster understanding together."
Music by Magnetic_Trailer from Pixabay
Connect with us:
• Bare Inc.
• Instagram
• X - Twitter
• Facebook
• YouTube
If your child is facing a life-saving liver transplant, please reach out to The Children's Organ Transplant Association or COTA. The COTA crew is looking forward to learning more about your family's Biliary Atresia journey. COTA works with families to lessen the financial burden of a life-saving transplant and support is provided at absolutely no cost. Please call COTA today at 1-800-366-2682 or go to www.cota.org/getstarted to learn more about how they can help.
Join Stephanie and Maria as they delve into the crucial topic of newborn screenings with special guests Anna Grantham and Aman Dhami-Judge. Their insightful conversation sets the stage for the upcoming BARE 2024 Symposium, where experts will further explore this vital aspect of infant health.
To learn more about Hunter’s Hope and their mission, visit their website here or connect with them on Facebook. You can also tune in to their podcast, 'Light of Hope,' available here.
Understanding Rare Diseases:
Krabbe Disease: Krabbe disease is a rare, inherited metabolic disorder characterized by the accumulation of harmful lipids in various cells and tissues, ultimately leading to the destruction of brain cells. Learn more about it here.
Biliary Atresia: Biliary atresia affects approximately one in 10,000 children, with a higher prevalence among males and Asian and African-American newborns. Contrary to popular belief, it is not an inherited disease. Find out more here.
Share Your Story:
If you or someone you know has experience with biliary atresia and would like to share your journey to support our initiative, please reach out to us at contactus@bareinc.org. Let's amplify voices and foster understanding together.
Connect with us:
• Bare Inc.
• Instagram
• X - Twitter
• Facebook
• YouTube
Support for Life-Saving Transplants:
If your child is in need of a life-saving liver transplant due to biliary atresia, reach out to The Children's Organ Transplant Association (COTA). They provide support to families, easing the financial burden of transplants at no cost. Call COTA today at 1-800-366-2682 or visit www.cota.org/getstarted for more information.
Music Credits:
Background music by Magnetic_Trailer from Pixabay.
Samantha shares Kendyl's inspiring Biliary Atresia story and how the disease impacted their lives.
Stephanie & Jen have a coffee talk discussion about the upcoming 2024 Bare Symposium which will be hosted at Stanford in Palo Alto, CA on May 10th and 11th.
In this episode, we chat with Dr Mogul about itching and BA.
Connect with us:
If your child is facing a life-saving liver transplant, please reach out to The Children's Organ Transplant Association or COTA. The COTA crew is looking forward to learning more about your family's Biliary Atresia journey. COTA works with families to lessen the financial burden of a life-saving transplant and support is provided at absolutely no cost. Please call COTA today at 1-800-366-2682 or go to www.cota.org/getstarted to learn more about how they can help.
In this episode, we will be discussing Will's Biliary Atresia story.
Connect with us:
If your child is facing a life-saving liver transplant, please reach out to The Children's Organ Transplant Association or COTA. The COTA crew is looking forward to learning more about your family's Biliary Atresia journey. COTA works with families to lessen the financial burden of a life-saving transplant and support is provided at absolutely no cost. Please call COTA today at 1-800-366-2682 or go to www.cota.org/getstarted to learn more about how they can help.
In this episode, we will be discussing Stevie's Biliary Atresia story.
Connect with us:
If your child is facing a life-saving liver transplant, please reach out to The Children's Organ Transplant Association or COTA. The COTA crew is looking forward to learning more about your family's Biliary Atresia journey. COTA works with families to lessen the financial burden of a life-saving transplant and support is provided at absolutely no cost. Please call COTA today at 1-800-366-2682 or go to www.cota.org/getstarted to learn more about how they can help.
In this episode, we will be discussing Caleb’s Biliary Atresia story.
Connect with us:
If your child is facing a life-saving liver transplant, please reach out to The Children's Organ Transplant Association or COTA. The COTA crew is looking forward to learning more about your family's Biliary Atresia journey. COTA works with families to lessen the financial burden of a life-saving transplant and support is provided at absolutely no cost. Please call COTA today at 1-800-366-2682 or go to www.cota.org/getstarted to learn more about how they can help.
In this episode, we talk with Dr. Ahmad Anouti.
Connect with us:
If your child is facing a life-saving liver transplant, please reach out to The Children's Organ Transplant Association or COTA. The COTA crew is looking forward to learning more about your family's Biliary Atresia journey. COTA works with families to lessen the financial burden of a life-saving transplant and support is provided at absolutely no cost. Please call COTA today at 1-800-366-2682 or go to www.cota.org/getstarted to learn more about how they can help.
Jordan and Steph discuss some topics pertaining to their B.A. journeys like only child vs. multiple siblings, guilt, depression, and a few more!
Connect with us:
If your child is facing a life-saving liver transplant, please reach out to The Children's Organ Transplant Association or COTA. The COTA crew is looking forward to learning more about your family's Biliary Atresia journey. COTA works with families to lessen the financial burden of a life-saving transplant and support is provided at absolutely no cost. Please call COTA today at 1-800-366-2682 or go to www.cota.org/getstarted to learn more about how they can help.
