For five days this June, families affected by Fanconi anemia gathered at The Painted Turtle in Lake Hughes, California for something both simple and meaningful: time with people who get it.

Held June 20-24, the 2026 Fanconi Cancer Foundation Family Retreat welcomed 50 members of the FA community from the United States, Vietnam and the United Kingdom, including five families who attended for the first time.

The retreat offers families a break from appointments, treatment decisions and everyday responsibilities. Children can try new activities and grow in confidence while caregivers learn, share practical support and connect with one another. The relationships formed at camp often continue long after everyone goes home.

Friendships New and Old

Throughout the weekend, new friendships formed naturally. One especially touching moment came when 8-year-old Ori connected with 9-year-old Logan. Logan walked up to Ori, gave him a hug and told him how glad he was that they had become friends.

For the many preteens and teenagers at this year’s retreat, camp offered a rare opportunity to spend time with peers who share some of their experiences without FA having to be the center of every conversation. They fished, played, laughed and got to be themselves.

One family described what that meant for their 14-year-old son, Blake:

“It was wonderful reconnecting with old friends and meeting new families who truly understand this journey. One of the highlights was watching Blake find a group of teenage boys his age who love to fish, play baseball, and just be normal teenagers together. Those connections are priceless.”

Old friends also picked up where they left off. Several families even made plans to extend their time together and explore Los Angeles after camp.

In the retreat evaluation, families repeatedly identified connection as one of the experience’s greatest benefits. One returning parent shared that both their child with FA and their child without FA formed close friendships.

“The ability to connect with other families is truly amazing, and in a rare disease that can feel isolating, that sense of community is truly invaluable.”

Confidence, Joy and New Experiences

Sometimes, the impact of camp appears in small but important moments.

Staff watched 17-year-old Eli become more engaged in activities and with the people around him as the weekend unfolded. He came out of his shell and even initiated hugs with his parents, something they said he doesn’t usually do. His experience showed how a special environment can help children build trust, try something new and grow in confidence.

There was plenty of joy, too. During the talent show, 11-year-old Nhi captivated the room with her piano playing. The show is always a highlight because it gives children and adults the chance to share what they love while their community cheers them on.

Learning From Professionals and One Another

Alongside camp activities, families attended educational sessions about nutrition, insurance, research, treatment and other aspects of life with FA. Participants valued the opportunity to hear from professionals, ask questions and take home information they could use.

A first-time attendee from Vietnam described the program as scientifically valuable while still being understandable for families. For her, the combination of medical education and community made the long trip worthwhile.

The retreat also created space for honest conversation. In caregiver support groups, family members exchanged coping strategies and learned from one another’s experiences. One parent called the sessions “a warm, supportive environment” where families could openly share their experiences, challenges and hopes. Another said the conversations strengthened their confidence in caring for their child.

These discussions can reduce isolation and give families ideas they can use when they return home. They also build a network people can turn to during difficult moments, important decisions and everyday life.

What Support Makes Possible

The Family Retreat is one way FCF supports families beyond the research we fund. It creates opportunities for belonging, education, confidence and respite for people living with a rare and complex condition.

This year’s retreat was made possible through the generosity of the Rice family and many other donors and partners who believe in the importance of bringing the FA community together. Their support helps families travel to camp, participate in meaningful programming and spend four days surrounded by people who understand.

The impact could be seen throughout the retreat: a first-time family finding their place, a teenager meeting friends who share his interests, a child stepping forward with new confidence and families traveling across countries to be together.

We are grateful to every family, staff member, volunteer, donor and partner who helped make the retreat possible, and to The Painted Turtle for providing a place where the FA community could connect, grow and belong.

The post A Place to Connect, Grow and Belong appeared first on Fanconi Cancer Foundation.

When my daughter Agustina was 2 and a half years old, our lives changed forever.

It was very difficult to reach a diagnosis. And when we finally received it, it was devastating.

We found ourselves in a desert.

The first thing we were told was that there was no cure. Then they told us our daughter would not live past the age of 6. It was one of the hardest blows our family has ever faced. No one could really explain what Fanconi anemia was. We only knew it was a rare disease, and that our little girl had very little time.

But Agustina had other plans.

She lived until she was 8 years old, defying everything that was against her. She fought tirelessly to live. She went through a bone marrow transplant, long hospitalizations, infections, medications, and countless blood and platelet transfusions.

Through it all, she never stopped being herself.

Agustina was a very happy and deeply loved little girl who always had a smile on her face. She was an actress, a singer, and a dancer. She dreamed of becoming a veterinarian because she loved animals so much. She loved visiting the farm, putting on makeup, listening to music, riding her bicycle with her dad, and living, simply living.

Living with Fanconi anemia is incredibly difficult for children and their families. They endure long, painful hospital stays and countless medical procedures. Every person with FA is different, but they all deserve the chance to live full lives.

That is why we need a real cure.

We also need more people to understand what families affected by FA go through every day. Greater awareness brings understanding, and understanding helps move us closer to better care, more research, and ultimately a cure.

My beautiful little girl, Agustina, passed away on July 30, 2024, at 6:10 p.m.

Today, I continue to honor her by carrying her legacy forward.

I am the founder and director of the Argentine Fanconi Anemia Group, an organization I created after Agustina’s diagnosis to raise awareness, make FA more visible, and support other families facing this disease. Today I continue this work from a different place, learning to live with endless grief while creating positive spaces of support and comfort for others.

To the donors who make research possible, thank you.

Thank you for your support. Thank you for helping our children have a better quality of life and for bringing us closer to the day when there is a real cure.

And to the Fanconi Cancer Foundation, thank you for always standing beside my family. Thank you for teaching us about this disease, for creating a global community that connects families across so many countries, for continuing to invest in research and support organizations around the world, and above all, for creating a place where we can remember the people with FA who are no longer with us.

Thank you for keeping their memory alive.

Agustina’s memory lives on in every family supported, every conversation that raises awareness, and every step toward the cure she deserved.

The post Why We Need a Real Cure  appeared first on Fanconi Cancer Foundation.

At the Fanconi Cancer Foundation, we work together to improve the lives of individuals and families impacted by Fanconi anemia. While creating brighter futures continues to motivate our community, we also recognize the importance of honoring and remembering those we’ve lost to FA and its complications.

Today, many across the FA community are grieving alongside the family and loved ones of Isaac Coleman. Isaac’s life, and the lives of so many others affected by FA, are a reminder of why this work matters so deeply. We are honored to include Isaac on the Memorial Wall alongside the many cherished individuals whose memories continue to inspire this community forward.

Grief takes many forms, and there is no single way to remember. We believe every life touched by FA deserves to be honored, and that no one should have to carry their love or grief alone.

Every life remembered here mattered deeply — and always will.

Explore the opportunities and resources offered to our Bereaved Families

As Bereaved Parents Awareness Month approaches this July, we invite you to visit our Memorial Wall to remember and celebrate those we’ve lost. If and when it feels right, we also invite families and loved ones to add a name, photo, and short tribute in honor of someone special.

Add a Loved One to the Memorial Wall

We are also welcoming story submissions for our blog. If you would like to share more about your loved one’s life, the impact they made, or what remembrance means to you, we would be honored to hear from you.

Share a Story with Our Community

Throughout July, we will to continue sharing the Memorial Wall and selected stories with the wider FA community. The Memorial Wall will remain on our website as a permanent space for remembrance. Your loved one will always be part of this community, and so will you.

Whether you choose to share a story, submit a tribute, or simply visit the Memorial Wall to honor these incredible individuals and their memory, thank you for being part of the FA community.

With compassion,
The FCF Team

The post The FA Memorial Wall: A Space to Remember appeared first on Fanconi Cancer Foundation.

They call themselves the “FAmily,” and that really is what they are. Everyone in the group communicates regularly and is there to share what they know.

Not only are the Fanconi Cancer Foundation and the families involved supportive, but they also spearhead fundraising efforts that have helped launch many of the trials advancing treatment and care for people living with FA and associated cancers.

Our daughter, Ryan, was part of one such trial at Lucile Packard Children’s Hospital Stanford in the fall of 2023. At age 7, she underwent a stem cell transplant due to bone marrow failure as part of this trial, which replaced radiation or a risky chemotherapy drug with an antibody called JSP-191. People with FA are extremely sensitive to radiation, and exposure to these treatments can be very risky. This gentler approach helped make stem cell transplants safer and more successful for Ryan and these patients.

Fast forward to today, Ryan will be 10 years old this October, and she is a happy and healthy kid. Her transplant was a success, and so was the trial.

Bone marrow failure is just one aspect of FA. It is a lifelong condition with many other health challenges that can arise throughout life. FCF continues to support research and fund groundbreaking cancer therapies. This research not only helps the Fanconi community but also contributes to advances in cancer treatment worldwide.

Our family owes a great debt of gratitude to the FCF for their continuous and unwavering commitment to rare diseases that otherwise might not have a voice. The future looks very bright for our “FAmily.”

The post Ryan’s Story: The Impact of Research, Support, and Community appeared first on Fanconi Cancer Foundation.

Liam’s story began before he was even born. During my pregnancy, there were early signs that something wasn’t quite right. He wasn’t growing at the same rate as other babies, but there wasn’t much information to explain why.

At 37 weeks, during a visit with our high-risk OB-GYN, we learned there was a malformation in Liam’s upper GI. That moment changed everything. It was the beginning of a journey we could not have anticipated. Thanks to the incredible genetics team at Joe DiMaggio Children’s Hospital, further testing led us to a diagnosis. Without their expertise and care, we may not have had answers. We are deeply grateful for them.

Liam was diagnosed with Fanconi anemia at birth. From the start, we were told to expect significant challenges. At one point, we were told that Liam might not be able to walk, crawl, or speak. Hearing that as a parent is overwhelming.

But Liam has shown us something different.

He has overcome those expectations, one step at a time.

Today, Liam is a happy toddler who loves to smile and laugh. He especially loves cars. He enjoys watching them, playing with them, and being around anything with wheels. Like any young child, he is full of curiosity and joy.

For our family, living with FA means living with faith. We see Liam as a normal, healthy child who continues to grow and surprise us. At the same time, we know there are real challenges. It can be frustrating when not many physicians have experience caring for individuals with FA. We wish there were more awareness and understanding of this condition, both in the medical community and beyond.

What we hope for most is more information. More knowledge can lead to better care, better support, and more possibilities for children like Liam.

To those who support research and make this work possible, thank you. Your generosity helps families like ours feel seen and supported. It helps create a future where children like Liam have more options and more hope.

Liam is more than a diagnosis. He is resilient, joyful, and full of life. And we are proud of everything he has already achieved.

The post Living with Faith and Possibility appeared first on Fanconi Cancer Foundation.

The Fanconi Cancer Foundation is proud to partner with organizations around the world that are working to improve awareness, care, and support for people living with rare diseases, including Fanconi anemia. One of these partners, the Ivan & Joan Foundation, based in Tanzania, continues to advance important advocacy efforts in its country through leadership and community engagement.

Recently, Winlady Boniface, founder of the Ivan & Joan Foundation, was invited to serve as a panelist at a national rare diseases symposium. The event brought together representatives from key government departments, health leaders, and advocates to discuss challenges and opportunities in rare disease care. Dr. Grace Magembe, Chief Medical Officer at the Ministry of Health, served as the guest of honor.

During the symposium, Winlady spoke on behalf of families of children living with rare diseases and highlighted several critical challenges affecting access to care:

• Delayed diagnosis of rare diseases
• Limited availability of orphan drugs
• Lack of health insurance coverage for costly treatments, including bone marrow transplants
• The absence of a dedicated unit within the Ministry of Health that provides accurate information about rare disease treatment

In response to these challenges, she presented several recommendations aimed at strengthening national support for rare disease communities:

• Establish a national rare disease database
• Create a specialized Center of Excellence for rare diseases to provide diagnostic tools, access to orphan drugs, and psychosocial support
• Include provisions for rare diseases within health insurance policies so that a portion of treatment costs, such as 50 percent, can be covered
• Develop a dedicated rare disease department within the Ministry of Health
• Integrate rare diseases into national health strategic plans

The symposium created an important opportunity for dialogue with government leaders and decision makers. According to Winlady, the discussions were productive, and officials from key departments responded to the issues raised and committed to exploring potential solutions.

Advocacy efforts like these play an essential role in building stronger systems of care for rare diseases. By elevating the experiences of families and engaging policymakers, organizations such as the Ivan & Joan Foundation are helping move rare disease awareness and care forward in their communities.

The Fanconi Cancer Foundation is honored to support and collaborate with partners around the world who are working to improve the lives of individuals and families affected by Fanconi anemia and other rare conditions.

To help community members explore advocacy opportunities, FCF offers coaching to support them in shaping their story and identifying a clear call to action. Please contact us if you’re interested!

The post Speaking Up for Rare Disease Communities appeared first on Fanconi Cancer Foundation.

Before my diagnosis, I just didn’t feel good for a while. I had frequent nosebleeds, bruised easily, and was tired a lot. Eventually, those symptoms led to testing and my FA diagnosis. At the time, I didn’t fully understand what was happening, but looking back, I can see how much my body was going through even at such a young age.

Today, I get to live a pretty normal life. Most of my day-to-day focus is on routine checkups, and for the most part, life feels typical. Still, there’s always a small, constant worry in the back of my mind that something could change. Living with FA means learning to hold both things at once: gratitude for feeling well and awareness that FA doesn’t simply disappear.

One thing I wish more people understood is that FA doesn’t go away after transplant. Even when things look normal from the outside, it’s something you live with for life. That reality shapes how you think about your health, your future, and the care you take with your body.

A defining moment for me came as I got older and started to understand how much I went through, even though I don’t remember all of it. Realizing that my life could have turned out very differently made me appreciate my health and where I am now in a deeper way. It changed how I see my past and how I approach my future.

I’m a high school junior and also a concurrent college student. I’m involved in school leadership, and I hope to work in health care someday. My goal is to become a CRNA and work in pediatrics, giving back in a meaningful way to the kind of care that made such a difference in my own life.

Looking ahead, I hope to stay healthy and see continued progress in FA research. In 2026, I’ll be celebrating several milestones: 10 years post-transplant, four years post spinal fusion, and turning 18. Those moments feel significant, not just as anniversaries, but as reminders of how far I’ve come.

To the donors who make research possible, thank you. The research and care you support truly change lives. You’ve helped make a future like mine possible.

FA is part of my life, but it’s not who I am.

The post A Part of My Life, But Not Who I Am appeared first on Fanconi Cancer Foundation.

My name is Carly, and I’m sharing our story as the parent of a child with Fanconi anemia (FA). My daughter, Paige, was diagnosed when she was 11 years old. Like many families, we had never heard of FA before it became part of our lives.

Paige’s diagnosis came when she presented at the hospital with bone marrow failure. Everything happened quickly, and suddenly we were trying to understand a rare, lifelong condition while also making decisions no family ever expects to face. It was overwhelming, frightening, and isolating.

In May 2015, Paige received a bone marrow transplant. Her sibling wasn’t a match, so we were incredibly grateful to learn that a donor overseas was. Finding that match was a defining moment for our family. It brought hope during a time when we were holding our breath, waiting for answers. At the same time, we had to have our other daughter tested, and the months of waiting to learn whether she might also have FA were some of the hardest we’ve lived through.

Daily life since then has been shaped by recovery and care. Paige is still recovering from her transplant, and supporting her through long periods of isolation and ongoing medical procedures has been challenging for our whole family. Living with FA means being constantly mindful. It’s a lifelong condition, and Paige will need to live a very healthy lifestyle to protect her health as much as possible.

One thing I wish more people understood about Fanconi anemia is exactly that: it doesn’t end with a single treatment or milestone. It’s something she will carry with her throughout her life, even as she grows, dreams, and plans for the future.

Paige is so much more than FA. She has a deep love of bugs and spiders and dreams of becoming an entomologist or arachnologist one day. She was also passionate about gymnastics and loved being active, until treatment made it no longer possible. Seeing her adapt and keep her curiosity and joy, even when so much was taken away, has been both heartbreaking and inspiring.

What I hope for most is a cure. And until then, I hope for Paige and others with FA to live lives as close to normal as possible, filled with opportunity, independence, and happiness.

To the donors who make research possible, thank you. Truly. Your support means hope for families like ours, and it reminds us that we’re not facing this journey alone.

The post Walking Beside My Daughter Through Fanconi Anemia appeared first on Fanconi Cancer Foundation.

Tara (center right) with her sisters Natalie and Brenna, and mom Mary Eilleen

Fear and sadness are embedded with Fanconi anemia (FA), yet I have always tried to have a hopeful tone to my essays thinking of the effect on the families who read it. This one is no different. I lost my gutsy 24-year-old daughter Tara in September. Her siblings nicknamed her “Puce” because she had amazing red hair. If anyone acted like a smart Alek, they were acting “pucey.” You get the idea. With her small frame, I called her the “perfect huggable human,” and I meant it. With her dry sense of humor and big personality, she also was the perfect youngest child of four. I told her that while I had those first three kids in less than four years, I waited, but knew I needed a fourth – I needed her.

She was created by God for purpose. I always told her she brought out the best in people. As the brain lesions associated with Fanconi began to multiply and her abilities began to be whittled away, all the ways we connected, and all the ways we reinforced faith in something bigger than this earth, better than a physical body that was failing, became eternally important. I would assure her that she was not her body – she was much more. She had a soul. 

Tara; and with her siblings Natalie, Brenna and Connor at Brenna’s wedding

The summer of 2025 was horrific. There were multiple aspirations and multiple hospitalizations that included an intubation. I was always hopeful when we got her home. While she was incredibly thin after continually losing weight and muscle mass, I would be encouraged by each bite she took. She could stand and take some steps with considerable help, but I told myself she was getting stronger. Then a week or so after being dismissed from the hospital, she slumped and couldn’t speak. We had dealt with so much with all the brain lesions, the seizures, the ebbing and flowing that sometimes gave a whisper of hope to her devastated family. I thought maybe the bladder infection they had been treating her for had reoccurred. We brought her into the emergency department of our local hospital in Grand Rapids, Michigan – a hospital whose doctors almost routinely admitted they knew nothing about FA, much less Fanconi Anemia Neurological Syndrome (FANS). I asked for a brain MRI as well, and they refused saying we couldn’t get one in the ER. I knew that wasn’t correct, but I justified the decision thinking they must believe it was the bladder infection, which can cause neurological symptoms in people prone to such things. We took her home.

Tara as her bright, colorful self; with her beloved dog Lily; and with her nephew Warren in early 2025, who locked right onto her!

Two days later, we were back insisting we needed a brain MRI. We succeeded in getting one, and it showed the largest lesion Tara ever had. She had what some doctors had called “speckle brain,” a lot of tiny lesions throughout the brain. This one was different – it took her speech and then within a few weeks, her life. 

Tara definitely fought the good fight. She rarely gave in to despair but often expressed confusion about what was happening to her. She said in her last year, “My body keeps breaking. I tell myself to stop breaking.” What was breaking was all our hearts. She didn’t deserve any of the heartache that FA and FANS delivered. None of the people with FA do. The added trial of FA is that one never knows which body part it will strike and with what. 

Little Tara on the way to her Make-A-Wish trip

So, how do we nurture hope? By grabbing gratitude with both hands. My hope and prayers for a cure for Tara went unanswered, but we are pulling for those still in the fight! I hurt so much for the life Tara didn’t get and the one she did, but I immerse myself in gratitude as much as I can. Gratitude: for family – so many prayed and supported; for friends – countless showed up for the visitation and funeral; for teachers from high school and even elementary school – they connected with Tara and they came to comfort us; for doctors, nurses, and physical therapists – many called me, more wrote, some sent plants and flowers and several paid their respects in person. Unbelievable. As a Catholic, I’m also grateful for the priest who showed up at our house the day she died to pray with us and then commended her soul to God at her funeral Mass. It’s comforting to understand how in her short life, she touched so many. 

The much adored little sister of the family

For those still running in the FA race we collectively hate, you have amazing, dedicated researchers and physicians who work in a lab and with patients and families, and countless others involved in the fight. We have the Fanconi Cancer Foundation with professionals of all sorts working in the trenches, serving those of us who suffer. 

Thanks to Tara for showing us an incredible example of faith, grace and courage, and thank you to everyone who aids in the war against FA. 

Gratitude may be cloaked in tears for now, but it lives. 

The post Tara Fought FANS with Grace and Courage; She Finished the Race appeared first on Fanconi Cancer Foundation.

Advancing a Natural History of FA-Associated Cancer

Investigators: Neelam Giri, MD, and Lisa McReynolds, MD, PhD
Institution: National Cancer Institute, NIH
Funding Amount: $249,950

Drs. Giri and McReynolds will continue their work developing an evidence-based cancer screening program for individuals with FA through supplemental funding to their existing NIH Center Comprehensive Program. Their project studies the natural history of oral potentially malignant lesions (OPMLs) and investigates biomarkers of carcinogenesis.

The NIH cancer screening program has already enrolled more than 80 participants and collected thousands of biospecimens. By collaborating with other FACC investigators, the team is analyzing DNA damage in these samples, offering valuable insight into how cancer develops in FA. Their work will help establish effective early detection strategies and create a robust biorepository for future cancer research.

Developing a DNA Ploidy Analysis Platform

Investigators: Martial Guillaud, PhD, and Denise Laronde, PhD
Institution: BC Cancer
Funding Amount: $95,787 — Funded by Fanconi Canada

This project builds on ongoing collaborations among BC Cancer, the NIH, and the University of Düsseldorf. Drs. Guillaud and Laronde are developing an automated DNA ploidy analysis platform for oral brush samples from individuals with FA.

This innovative, noninvasive method enables frequent monitoring of cellular changes over time, providing critical insight into how precancerous lesions progress. Earlier detection and intervention can lead to better outcomes and a deeper understanding of FA-related cancer development. FCF extends sincere gratitude to Fanconi Canada for their continued partnership and support of this research.

Reducing the Burden of Squamous Cell Carcinoma in FA

Investigators: Eunike Velleuer-Carlberg, MD, and Christine Krieg
Institution: University of Düsseldorf; German Fanconi Anemia Family Support Group and Research Fund
Funding Amount: $74,366

This project continues the long-running “Reducing the Burden of SCC in Fanconi Anemia” initiative, first funded by FCF in 2006. Dr. Velleuer-Carlberg and Ms. Krieg lead efforts to advance oral cancer screening through education, outreach, and research.

Their work has shown the effectiveness of brush biopsy screening and continues to promote awareness among individuals with FA, clinicians, and dentists. Ongoing DNA ploidy analysis of pre-malignant cells will improve early detection and expand understanding of cancer progression in FA.

Testing Chemoprevention Approaches for Oral Cancer

Investigators: Agata Smogorzewska, MD, PhD, and Rachel Uppgaard, DDS
Institution: Rockefeller University; University of Minnesota
Funding Amount: $250,000

With a 500–700 times greater risk of head and neck squamous cell carcinoma, individuals with FA face a pressing need for prevention strategies. Building on findings from FCF’s collaboration with Stand Up to Cancer, this multi-institute clinical trial evaluates naproxen and metformin as potential chemopreventive drugs for oral cancer. The study will assess both safety and biological markers of cancer prevention, establishing the framework for future chemoprevention trials in FA.

A Shared Commitment to Progress

The Fanconi Anemia Cancer Consortium brings together scientists, clinicians, and advocates from around the world who share a mission to reduce the burden of FA-associated cancers. FCF’s continued investment in this work—and the collaboration of dedicated partners like Fanconi Canada—helps drive meaningful progress toward earlier detection, improved care, and ultimately, prevention.

The post Fanconi Cancer Foundation Expands Cancer Consortium Research with New and Continued Grants appeared first on Fanconi Cancer Foundation.