AnnaSophia Berry has spent her entire life navigating the fragile balance between survival and the cost of survival. Born with complex congenital heart disease, she received her first heart transplant as an infant. Then, after a second transplant in June 2025, she was diagnosed with PTLD. This is her story.

If you have been part of the pediatric kidney transplant community for a while, you may remember a group called the Community Engagement Workgroup, or CEW. That group has grown into something even more powerful. Today, it is called IROC Family Partners , and Transplant Families is proud to call them one of our most trusted partners. What is IROC Family Partners? IROC Family Partners is a patient and family-driven community within the Improving Renal Outcomes Collaborative (

Every kidney in this community has a story. A fight. A family who showed up every single day and kept showing up long after the hard part was supposed to be over. This March, during National Kidney Month, we want to honor that fight and give you something practical to carry with you. And if you are here as a heart, liver, or multi-organ transplant family, this post is for you too. Kidney health is one of the most universal long-term concerns across all transplant types. The

If your child received a heart or lung transplant as a kid, you already know that growing up with transplant is not a straight line. At some point, the questions change. Communication changes. Independence grows. The medical team changes. And for many families, the transition from pediatric to adult care can feel like a whole new chapter to navigate. The International Society for Heart and Lung Transplantation (ISHLT) Pediatric to Adult Transition Taskforce , in collaboration

If you are a young adult who has grown up with transplant, or you love a young adult who has, you already know this stage is its own kind of journey. College or work. Insurance. Med independence. Dating. Mental load. Explaining your story to new people. Finding your people. This study is a chance for young adults to connect with others who “get it,” and to share lived experience in a way that can shape better support for the next group coming up behind them. Parents and careg

We see love everywhere in this community. We see it in the chair that never leaves the bedside, in the parent who knows the numbers and the routines by heart, and in the way families keep showing up even when they are running on empty. In transplant, love is not abstract. It is action. In the transplant world, love doesn’t show up as a perfect movie moment. It shows up in the ordinary bravery of parents who keep a bedside rhythm going for weeks or months at a time. Love look

Are your kids Fortnite gamers? Here’s their chance to support research in pediatric transplant while playing the games they love. This Heart Month, an innovative new quest inside Fortnite’s Super Pet World is blending storytelling, empathy, and real-world impact in a way we have never seen before. Enduring Hearts  has partnered with Ghost Gaming to launch a limited-time experience called “Side Quest: Heartbeat on the Wind.”  The quest invites players into the story of Alice,

Attention: Heart Transplant Families At Transplant Families, we believe children and caregivers deserve to see themselves reflected in the resources designed to support them. The Pediatric Heart Transplant Society (PHTS)  Guidebook Revision Group is currently inviting original artwork created by children and youth to be featured in the upcoming edition of the PHTS Guidebook . What is PHTS? The Pediatric Heart Transplant Society is a collaborative network of pediatric heart tr

January is usually a time when we talk about wellness. Fresh starts. New routines. Hopeful resets. This year feels different. Across the transplant community and the broader medical world, many of us are carrying a level of heaviness that cannot be fixed with a gratitude list or a deep breath. Families are navigating chronic stress, uncertainty, and fear. Clinicians and researchers are facing defunded programs, stalled progress, and growing public distrust of medicine. Measle

Celebrations shouldn’t add pressure — especially during a month full of expectations, emotions, and unpredictability. For transplant families, the most meaningful holiday traditions are often the simplest ones. Here are gentle, low-stress ways to create connection and comfort without overwhelming your child or yourself. 1. Make your own definition of “holiday magic” Your holiday doesn’t have to look like anyone else’s. If your child needs rest, stability, or quieter routines,

Winter Wellness Tips for Transplant Families The holidays are here — a time filled with cozy nights, glittering lights, family traditions, and joyful surprises! But for transplant families, the season also brings extra challenges like cold and flu germs, busy schedules, and sometimes stressful travel or gatherings. That’s why a little preparation can go a long way in helping your child stay healthy, comfortable, and confident all season long. 💪✨ Whether you’re celebrating bi

For many transplant families, gratitude becomes more than a feeling — it’s a daily rhythm. Between hospital visits, medication schedules, and school pickups, the quiet moments of thankfulness often hold the most meaning. This month, we celebrate the everyday acts of gratitude  that sustain our community. Gratitude might look like a parent thanking a nurse who goes the extra mile, a donor family lighting a candle for the child they loved, or a teen transplant recipient writing

We’re thrilled to spotlight Bonus Days Magazine , a beautifully artistic publication that celebrates life before and after transplant with features for teens, parents, and adult recipients . Every issue feels like a gallery filled with powerful photography, intimate essays, and practical wisdom from people who truly get it . Why this magazine is different At the helm is Editor in Chief Alison Conklin , a professional photographer and adult heart transplant recipient  who was

When the team at Loma Linda University Children’s Hospital first met baby Eddie “Moses” Anguiano in 1985, his future was uncertain. Born with a rare and fatal heart condition, he spent his earliest days surrounded by wires, monitors, and the quiet strength of his parents and care team. At just four days old , Eddie became the first baby in the world to receive a successful human-to-human infant heart transplant . The surgery took place on November 20, 1985 , under the leaders

If you are interested in participating, please click the link below to complete the survey: https://redcap.nyumc.org/apps/redcap/surveys/?s=YWR88X3PHHLJW8MX

You know your child best—pick what fits, skip the rest, and keep the joy. Here are simple ideas and links to a few of our favorite past TF guides. Trick-or-treating, simplified Costumes that move with you (breathable layers, comfy shoes) Shorter routes, earlier hours, well-lit areas Pre-wrapped treats only, or try a fun candy-swap  at home Teal Pumpkin  = non-food treats welcome and inclusive Low-energy options: porch “wave-by,” driveway trick-or-treat, movie-night + treat bu

Why this matters You may have seen in the news lately that scientists are testing ways to convert some donor organs toward a more “universal” blood type. It’s very early—not in pediatric practice yet—but it could one day help more kids match faster. Watch our webinar Why ABO matching matters for families → https://www.youtube.com/watch?v=HfXX5BSiUnA Read more UBC release (first human test context): https://news.ubc.ca/2025/10/universal-organ-transplant/ Nature overview (backg

A big thank you to all who joined us live for this session! SGLT2 inhibitors are medicines first used in diabetes and heart health. Clinicians are exploring where they might fit in transplant care. Here’s a quick orientation and questions to bring to clinic. What you’ll learn in the session What “SGLT2” means and why it’s being discussed Potential benefits/risks teams watch for How labs and follow-up might change if used Smart questions to bring to your next visit Watch the

Fall means more indoor time and more germs. For kids on immunosuppression, a few small habits—done consistently—go a long way. Your simple safety rhythm Post your sick-day plan.  Keep clinic and after-hours numbers on the fridge (template below). Refresh hand hygiene + masks as needed.  Busy indoor spaces or sick season? Pack your Tiny Clean Kit. Ventilate when you can.  Crack a window in carpools and gatherings. Keep routine care on track.  If you’re due for vaccines or well

October 13, 2025 | 3 PM ET / 12 PM PT | Online You may have heard the name, but what exactly are SGLT2 inhibitors—and why are they...