BARE IT ALL is about the GOOD, the BAD, and the UGLY parts of Biliary Atresia and we discuss some of the most vulnerable experiences patients & caregivers go through. If you or someone you know has experience with biliary atresia and is willing to share your journey publicly to support our initiative, please contact us at contactus@bareinc.org. Let's amplify our voices and foster understanding together.
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.
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 • 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 #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: • 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
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 • 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
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 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 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 Twitter Facebook 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: Bare Inc. Instagram X - Twitter Facebook 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: Bare Inc. Instagram X - Twitter Facebook 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: Bare Inc. Instagram X - Twitter Facebook 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: Bare Inc. Instagram X - Twitter Facebook 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: Bare Inc. Instagram X - Twitter Facebook 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: Bare Inc. Instagram X - Twitter Facebook 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.
Jen and Jordan talk with Lorraine Stiehl, CEO of the American Liver Foundation. 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. Resources from This Episode: Liver - American Liver Foundation Liver Function for Kids (liverfoundation.org) https://www.facebook.com/liverinfo https://twitter.com/liverUSA https://www.youtube.com/user/americanliver https://www.congress.gov/bill/118th-congress/senate-bill/1384/all-info https://www.bareinc.org/
Jen and Jordan discuss friendships before, during, and after their child's transplant.
In the fifth episode of our Story Series, we focus on two people: Ezra's journey from diagnosis to Kasai and Jennafer, Ezra's mom, who while treating Ezra was diagnosed with stage 4 metastatic breast cancer. Jannafer talks about her journey with Ezra as being the caregiver and how it shifted when she learned she was sick. this episode also provides an honest prospective about life from the eyes of a mom who is staying strong for her family.
The fourth episode of the Story Series provides a perspective not always seen in BA - Will not requiring a liver transplant until he was 12. We talk with Amanda and Dan, Will's parents, about their experience with Will's diagnosis and the social and emotional aspects of raising a child and pre-teen who eventually required a transplant. Dan, Will's father, talk about his experience as Will's living donor and Amanda gives the caretaker perspective.
In our third episode of The Story Series, we speak with Natalie, the mom of Connor. Natalie talks about Connor's diagnosis, balancing major life choices at the same time as Connor's diagnosis and what life looks like as a mom to a kasai-only BA child. Natalie provides an optimistic and real perspective to the milestones in her and her family's life.
In the second episode of BARE's Story Series, we meet Briggs' mom, Brittany. Brittany talks about her experience with Briggs' BA diagnosis as well as his first, second and THIRD liver transplant. We explore the long-term impact organ donation has had on their family's life. In honor of Donate Life Month, BARE explores different organ donation journeys.
In honor of Donate Life Month, BARE explores different organ donation journeys. In our first episode of the Story Series, Jen talks to Stephanie and Arvid Skrede about the BA journey with their youngest daughter, Sophia. Music this episode courtesy of Michael Kobrin - The Introvert.
A discussion about mental health in the BA community with BARE's partner Liver Mommas! Music clips - I'm Fine by Ashe - All I Really Want by Alanis Morissette Book reference: The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma by Bessel van der Kolk M.D. - https://www.amazon.com/Body-Keeps-Score-Healing-Trauma/dp/0143127748
Jordan and Jen talk with Jenny Tice about her journey with BA and transplant as an adult.
Jen and Jordan discuss love and marriage and how going through a pediatric liver transplant affected both, with special guest Morgan Hill. 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 are 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.
BARE's Jen and Jordan discuss center rankings with Dr Saeed Mohammad and Riccardo Superina from the BARE Medical Advisory Committee
Music by AudioCoffee from Pixabay Links mentioned in this episode: Website: transplantfamilies.org Twitter: twitter.com/transplantfams Facebook: facebook.com/transplantfamilies Instagram: instagram.com/transplantfamilies YouTube: youtube.com/user/TransplantFamilies LinkedIn: linkedin.com/company/transplant-families Pinterest: pinterest.com/transplantfams/
This episode talks about the resources available to Biliary Atresia families through COTA- Children's Organ Transplant Association and how they have helped many families go through the BA to transplant journey.
This is BARE's first episode of season 1 and Jordan and Jen explain briefly why they wanted to start a podcast and what's in store for their listeners.
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