Promising research needs continued support to answer the next question. A laboratory finding may need testing in more models. A screening study may need years of follow-up. An approach ready for a clinical study needs the resources to evaluate safety and learn from participants’ experiences.

On Oct. 1, the Fanconi Cancer Foundation’s Board of Directors approved nine research awards totaling approximately $2.35 million. The awards will catalyze research on cancer prevention, earlier detection, treatment discovery, blood and marrow research, and the shared information needed to improve care.

Test familiar drugs for cancer prevention

Earlier FCF support helped bring a preclinical study of naproxen and metformin to the point of clinical testing in a cancer prevention study. A renewed $250,000 award to Dr. Agata Smogorzewska at The Rockefeller University and Dr. Rachel Uppgaard at the University of Minnesota will enroll 48 participants with FA. 

The study will test the drugs during separate intervention periods, assessing safety, tolerability, oral lesions and biological changes associated with cancer development. The question is whether these drugs can safely alter changes that precede oral cancer in FA. Their use for other conditions does not establish that they can prevent cancer in people with FA.

Build stronger evidence for earlier detection

A $249,850 award supports Dr. Lisa McReynolds’ comprehensive cancer screening program at the National Cancer Institute at NIH. With more than 100 people enrolled, the program combines screening with the collection of samples over time. Continued support will help researchers evaluate potential cancer warning signs and prepare information for shared research through FRIENDS.

A $240,881 award to Drs. Martial Guillaud and Denise Laronde at BC Cancer, funded by Fanconi Canada, will advance oral cancer biomarker research. The team will study abnormal DNA content in brushed oral cells and additional biological markers, following changes over time. The aim is to help identify which lesions warrant closer evaluation.

Find treatments that spare vulnerable healthy cells

Earlier FCF-funded research helped establish development of lab-grown organoids, models of healthy, precancerous and cancerous tissue from people with FA. That work has already identified drugs that preferentially kill cancer cells, providing candidates for further investigation.

A renewed $329,690 award to Dr. Hiroshi Nakagawa at Columbia University and Dr. Kenneth Weinberg at Stanford University will help the team assess the most promising drug candidates for prevention or treatment of FA cancer. The researchers will examine the selectivity of the drugs and whether they cause DNA damage. The goal will be to identify drugs that are suitable for eventual clinical testing. Testing healthy FA tissue alongside cancer is central to that work.

Reduce damage before it leads to disease

Two new awards investigate ways to limit DNA damage caused by aldehydes, substances produced during normal metabolism that FA cells can have difficulty managing.

Dr. Grant Rowe at Boston Children’s Hospital will receive $250,000 to investigate ways to boost an enzyme called ALDH9A1, which helps break down aldehydes. The work grew from an observation in blood-forming cells from a person with FA who had not developed marrow failure. Laboratory studies suggested that a variant in the enzyme could improve removal of damaging aldehyde byproducts. The new project will look for drugs that activate the enzyme and test their protective potential.

Dr. Meng Wang at Cornell University will receive $249,995 to test approaches that intercept formaldehyde before it damages DNA. The work includes investigating whether sustained drug treatment can protect against marrow failure and leukemia in FA models. Both projects remain in laboratory and animal research, where effectiveness and safety must be established before studies in people.

Explore new ways to address blood and marrow disease

A $250,000 award to Drs. Branden Moriarity and John Wagner at the University of Minnesota will support development of a gene correction approach in FA blood-forming cells and mouse models. The technique seeks to insert a functioning gene, potentially allowing correction directly in the body in the future.

A separate $200,000 award to Dr. Agnieszka Czechowicz at Stanford University and Dr. Tippi Mackenzie at the University of California, San Francisco, supports initiation of an early clinical study of prenatal stem cell transplantation for FA. The study will use maternal blood-forming stem cells delivered through the fetal umbilical circulation.

The prenatal study will investigate an approach intended to prevent blood and marrow disease. Its potential benefits remain unproven, and maternal and fetal safety, lasting establishment of the transplanted cells and long-term outcomes are essential questions. Neither project establishes a way to correct all tissues affected by FA or prevent solid tumors.

Connect information across institutions

A renewed $330,000 award to Dr. Samuel Volchenboum and collaborators at the University of Chicago will support FRIENDS, the 19-institution consortium building a shared data resource for FA research.

The next steps include compiling clinical data from the 19 participating institutions and piloting contributions of electronic health records from individuals. This resource will enable research on cancer, transplant effects, fertility and other aspects of FA care across a larger community. The award includes $80,000 for external institutional work to prepare records for shared analysis.

Continue the work earlier support made possible

These nine awards reflect different stages of research, from discovering how cells protect themselves to testing an intervention in people. Each supports a defined next step, with further evidence needed before an approach can become part of care.

For donors, continued funding allows researchers to build on earlier contributions rather than stop at an encouraging result. For people affected by FA, it supports work toward more informed care, earlier detection and safer options. We’re grateful to the individuals, families, donors and partners helping make these next steps possible.

The post Nine Newly Funded Research Grants Support Next Steps in FA Care appeared first on Fanconi Cancer Foundation.

Some people lead organizations. A rare few create the conditions for an entire field and community to grow.

More than four decades ago, Lynn Frohnmayer was a mother searching for answers after learning that three of her five children had Fanconi anemia. There was no roadmap and no established network of families or experts. Information was scarce, treatments were limited, and the future her family had been given was devastating.

So Lynn began learning.

She read every scientific paper she could find and called the researchers who had written them. She reached out to other families by mail. She listened, asked questions and shared what she learned.

On Oct. 2, the Fanconi Cancer Foundation honored that lifetime of work with its Lifetime Achievement Award at the FA Scientific Symposium in Phoenix. The audience rose in a standing ovation, recognizing a woman whose persistence and care helped build the community gathered in the room.

From the first letters to a worldwide community

In 1985, Lynn’s outreach became a family support group and the FA Family Newsletter. Families who had been searching on their own could now share information and find someone who understood.

In 1989, Lynn and her husband, David, invited researchers to Portland and asked them to “bring their brains.” Together, they established principles that still guide our work: bring people together, share knowledge, support promising science, encourage collaboration and keep the needs of families at the center.

That same year, a few checks made out to an organization that didn’t technically exist yet led Lynn and David to establish the Fanconi Anemia Research Fund in Eugene, Oregon.

It was, as Lynn has called it, an accidental organization. But what followed was anything but accidental.

For decades, Lynn wrote and edited newsletters, helped develop clinical care guidelines, evaluated research proposals, organized scientific and family meetings, served on the board, raised research funding and supported families through some of the most difficult moments of their lives.

“Lynn brought families’ questions directly to researchers and helped secure the funding to pursue answers,” said FCF CEO Isis Sroka. “She also understood that families needed more than scientific progress. They needed reliable information, someone who would listen, and a community they could count on. Her work helped build all three, and those needs still guide every decision we make.”

More years of life and more work ahead

Lynn kept returning to a question that has moved this organization forward: What must we do next to help people with FA live longer, fuller lives?

That question helped focus research on gene discovery, safer bone marrow transplantation, gene therapy and, increasingly, the prevention, detection and treatment of cancer.

With substantial support from the Eugene community and donors beyond it, Lynn and David helped raise tens of millions of dollars for research. Today, the Fanconi Cancer Foundation has invested more than $35 million in studies worldwide.

Many children with FA once were not expected to reach adulthood. Today, adults are living into their 30s, 40s and beyond. Bone marrow transplant survival exceeds 90% for people treated at experienced FA centers. Scientists have identified 23 genes associated with FA, including BRCA1 and BRCA2, two genes linked to inherited breast cancer risk.

These advances mean more time together and more possibilities for the future. They also make safer cancer care increasingly urgent. People with FA face a high cancer risk, and standard chemotherapy and radiation can cause severe harm because of their DNA-repair disorder. FCF supports research to prevent cancer, detect it earlier and develop safer treatments, alongside gene therapy, gene editing and other approaches to FA and its complications.

A commitment that continues

Lynn and David’s three daughters with FA, Kirsten, Katie and Amy, all died from complications of the condition. David, who served as University of Oregon president from 1994 to 2009, died in 2015. Lynn has continued her work for the FA community, supporting families and helping advance the research they need.

The progress we celebrate belongs to many people: families who shared their experiences, scientists and clinicians who pursued answers, and donors and fundraisers who made the work possible.

But every community needs someone willing to write the first letter, make the first call and invite the first people into the room. Lynn was that person, again and again.

This award honors what Lynn has accomplished and how she has done it: with intellectual curiosity, honesty, persistence and compassion. We’re grateful for the community she helped build and for the care she continues to bring to it.

The post Honoring Lynn Frohnmayer’s lifetime of commitment to the FA community appeared first on Fanconi Cancer Foundation.

My sons, Suria Prabhu and Prasath Raj, will always be part of me. I lost both of them to Fanconi anemia (FA), and that is a pain I will carry with me forever. But I don’t want their story to end with their loss.

By sharing our journey, I hope to create more awareness about FA in Malaysia and help other families find information and support earlier than I did.

Learning about FA

Suria Prabhu was 3 years old when he was diagnosed with FA. Prasath Raj was just 6 months old.

As a mother living in Malaysia, I honestly had no idea about Fanconi anemia at the beginning. I thought my children’s health differences were related to the fact that I had married my cousin and that they had some kind of genetic disorder.

When we finally found out it was FA, it was a huge shock. It took me around six months to accept the reality that my children might not reach adulthood. It was a very difficult and painful journey as a mother.

I didn’t fully understand FA when we first received the diagnosis, so I learned along the way. I had very little information and felt very alone.

Living with worry, giving with love

FA was a big part of our daily life. I was always worried about my children’s health, blood counts, hospital visits, transfusions and infections. There were many difficult days, and I was constantly trying to keep them safe and strong.

It was emotionally very difficult, but I always tried to be there for my children and give them as normal and happy a life as possible.

Cooking and baking have always been ways for me to show my love and bring my family together. My sons used to tell everyone, “My mom is the best cook!” That is one of the little memories I will always treasure.

I also enjoy my work, keeping myself busy and exploring new places through traveling. After everything I have been through, I have learned to appreciate the simple things in life and cherish every moment.

Learning to let go of guilt

One of the hardest parts of my FA journey was the guilt I carried as a mother. My children sometimes blamed me for marrying my cousin, and I also blamed myself. I often wondered, “If I had not married my cousin, could I have prevented my children from having FA?”

I carried that guilt for many years. But I eventually understood that I did not know about FA or how genetic conditions could affect my children. I was making decisions with the knowledge I had at that time.

That was very painful for me to accept, but I learned that I cannot change the past. What I can do is share my experience and raise awareness, especially in Malaysia, so other families can have better information and support earlier than I did.

Hope for other families

I wish more people understood that FA is much more than just a blood disorder. It affects the whole family emotionally and physically. As a mother, there is always fear and worry about what the future will bring.

FA families need understanding, support and hope. Sometimes, just having someone listen can mean so much.

What I hope for most is greater awareness, earlier diagnosis, access to treatment and support for families affected by FA in Malaysia. I hope no other mother has to go through what I went through, feeling confused, unprepared and alone while watching her children struggle with FA.

Most of all, I hope children with FA will have the chance to live longer, healthier and happier lives, and that one day there will be a cure.

To every donor who makes research possible, thank you from the bottom of my heart. I know how frightening and lonely this journey can be, especially when you don’t have enough information or support. Your donations help make research, better treatments and the possibility of a cure possible.

I may not be able to change what happened to my children, but knowing that research is continuing gives me hope that other children with FA, especially in Malaysia, may have a different and better future.

Carrying their memories forward

I am divorced and now living on my own. I honestly don’t know what the future will bring, but I am learning to take one day at a time.

I will miss my children every day, and I know I will carry their memories in my heart until my last breath.

My sons will always be part of me, and I hope their journey can bring hope to other FA families.

The post Remembering Suria Prabhu and Prasath Raj appeared first on Fanconi Cancer Foundation.

The Fanconi Cancer Foundation is pleased to recognize Dominika as the first-place recipient of the 2026 Winn/Byrd Award for Adults with FA. Dexter Sherrell received the second-place award for his work connecting people affected by rare diseases with researchers, health care professionals and advocates.

Making information and support more accessible

Dominika’s connection to FA began before she was born. Her older sister, Michaela, died from complications of FA in 1989 at just 8 years old. Although Dominika never had the chance to meet her, she knows her sister’s story and the grief her family continues to carry.

That experience, along with her own life with FA, informs her commitment to helping other families. She founded the first Czech Facebook group for people with FA and created a website sharing information and her family’s experiences. She also serves as the Czech Republic’s contact person on the European FA website, helping connect people with the wider FA community.

One of her central projects is translating the Fanconi Anemia Clinical Care Guidelines into Czech. A public fundraising campaign helped get the work started. In her acceptance video, Dominika shared that the first five chapters have now been professionally translated.

She plans to use the award to help fund the remaining chapters, support her website and connect with doctors and others who can help advance the project. Her goal is to make reliable information available in Czech to people with FA, their families and the health care professionals who care for them.

“I hope that one day, when a child is diagnosed with FA in the Czech Republic, their parents won’t have to search for information themselves,” Dominika said in her acceptance video. “They will know who to turn to and that they are not alone.”

Outside her advocacy work, Dominika runs her own business and shares a love of cars and drifting with a motorsport community. A documentary in production about that community also includes her experiences with FA, offering another way to introduce people to the condition.

Dominika recorded her acceptance message while recovering from brain tumor surgery and was unable to attend in person. She thanked her family, friends, doctors, FA Europe and FCF for supporting her work.

“This award means more to me than just first place,” she said.

Recognizing Dexter Sherrell

Second-place recipient Dexter Sherrell draws on his experiences with FA, leukemia, liver cancer and transplantation to support others navigating complex health conditions. Through advocacy and advisory groups, research collaborations and mentoring, he helps bring the perspectives of individuals and families into conversations about research, care and policy. Dexter recently completed a bachelor’s degree in cybersecurity while navigating cancer treatment and organ transplantation. He plans to pursue graduate studies in ethics, leadership and health care policy, and will use the award to support his education, professional development and participation in advocacy meetings and research conferences. As he wrote in his application, “My hope is that every opportunity I receive ultimately creates opportunities for others.”

About the Award

The Amy (Frohnmayer) Winn and Christopher T. Byrd Award for Adults with Fanconi Anemia honors two former FCF board members who set high goals and devoted themselves to making a difference. The award recognizes adults with FA who are pursuing their own goals and demonstrating leadership in ways that matter to their communities.

The post Dominika Michalíková Receives the 2026 Winn/Byrd Award for Adults With FA appeared first on Fanconi Cancer Foundation.

Our son Blake is 14 years old and eight years post bone marrow transplant. He recently had his long-term follow-up appointments with Seattle Children’s and Seattle Cancer Care Alliance. The news was encouraging. His blood counts continue to look excellent, and all of his blood-forming cells still come from his donor.

While we celebrate these milestones, it’s important to remember that the transplant did not cure his Fanconi anemia. It gave him something incredibly valuable, more time, but FA is still part of his life.

As he gets older, we’re entering a phase when cancer surveillance, especially for oral cancers, becomes critically important. Blake is currently participating in an NIH study using oral swabs designed to detect oral cancers at the earliest stages. For individuals with FA, early detection truly is the best treatment, as many cannot tolerate chemotherapy and radiation the way the general population can.

Preparing for high school

This year, Blake starts high school. Middle school wasn’t easy. Like many kids with FA, Blake is much smaller than his peers, and those differences become even more noticeable during those years. He struggled with confidence and was having a difficult time academically.

Last year, we found an incredible tutor who not only helped him catch up in school but also helped him believe in himself again. He transitioned into general education classes and finished the year with mostly A’s and B’s.

Discovering a passion for fishing

One of the biggest blessings this past year has been watching Blake discover a passion for fishing. He spends hours watching YouTube and Instagram videos, teaching himself new knots, techniques and anything else he can learn. Almost every day, he’s searching for a new pond or small lake to explore.

We’ve been dropping him off at local ponds, where he’ll happily fish for five or six hours, sometimes by himself and sometimes with a friend. This summer, Blake competed in his first youth bass fishing tournament, hosted by an amazing local nonprofit whose volunteer captains donate their boats and time to mentor the kids. There were 30 captains and 60 young anglers participating. Blake and his teammate finished second overall, and we couldn’t have been prouder.

As a parent of a child with FA, it’s incredibly hard to watch your child struggle with things that come more easily to others, whether it’s sports, school or simply feeling like they fit in. Fishing has given Blake something that FA never could: confidence, purpose and a place where he truly shines.

I’m definitely not much of a fisherman myself, and honestly, it’s not my favorite hobby. But I absolutely love hearing him tease me after he catches 15 fish while I catch … zero. Yes, that actually happened.

More than anything, I love seeing him find something that brings him genuine joy.

Healthy doesn’t mean cured

We are incredibly thankful that Blake remains healthy. But healthy doesn’t mean cured. Fanconi anemia is always there, quietly in the background.

While life may look normal from the outside, the reality is that we know Blake’s journey will almost certainly become more complicated over time. Recently, we’ve watched several FA families lose children and loved ones. Those reminders are heartbreaking and bring us back to the reality of this disease.

We also recently attended the FA Family Retreat at The Painted Turtle in California. It was wonderful to reconnect with old friends and meet new families who truly understand this journey. One of the highlights was watching Blake find a group of boys his age who love to fish, play baseball and simply be normal teenagers together. Those connections are priceless.

Thank you to everyone who has continued to support Blake and our family over the years. Your prayers, encouragement and kindness have meant more than you’ll ever know.

We continue to celebrate every milestone, cherish every season and remain hopeful for the future while supporting the ongoing search for better treatments and, one day, a cure for Fanconi anemia.

The post Finding Confidence and Joy as a Teen With FA  appeared first on Fanconi Cancer Foundation.

When I was 20 weeks pregnant, my doctor recommended an amniocentesis so we could find out what was causing concerns during my pregnancy. They took amniotic fluid for testing, and that’s when my husband and I learned our daughter had a rare genetic disorder called Fanconi anemia (FA). We found out that we were both carriers, something we had never known.

We didn’t know what to think.

As my pregnancy continued, we learned more about FA from our doctors, but we tried not to spend too much time looking online. We wanted to take things one step at a time and discover what Luna’s journey would look like.

Luna was born on May 15, 2025, at 37 weeks, weighing just 4 pounds. At only 3 days old, she had surgery, and we spent a month and a half in the NICU.

During that time, I felt like we were all learning together. I cried all the time because I was so upset, but at the same time I felt so blessed. I blamed myself and felt like I was on a roller coaster. But as I watched how strong my beautiful baby girl was, she helped me become stronger too. She gave me the courage to learn, understand, and do everything we needed to do for her.

Learning From Luna Every Day

Luna is now 1 year old, and she has taught my husband and me that the sky is the limit.

She has been such a light in our lives. She is happy, beautiful, silly, and loves to sing and play.

We’ve learned that Luna has no radial bone in either arm, no thumbs, a horseshoe-shaped kidney, a spiked spleen, and a malformed left ear with no ear canal. She sees many different specialists, and now visits hematology twice a year while we do everything we can to keep her healthy.

It isn’t always easy, but Luna makes it so much easier to keep going, keep learning, and live life to the fullest.

Taking One Appointment at a Time

Honestly, every doctor’s appointment has been a defining moment in our journey.

In addition to hematology, Luna sees orthopedic doctors, eye doctors, hormone doctors, kidney doctors, an ear doctor, a nutrition doctor, and more. Every time we went to an appointment, we were so nervous about the results or what we might learn next.

Eventually, we realized we needed to be strong for her and focus on every positive thought we could.

Then, at one of her liver appointments, we got good news. They told us she no longer needed to be seen because her liver looked fine. They may check on it again someday, but for now everything looked good.

That reminded us that not every appointment would bring bad news. Some would bring hope. And no matter what comes, we’ll face it together as a family.

You’re Not Alone

Before Luna, we had never even heard of Fanconi anemia.

I think many people hear the word “anemia” and assume that’s all it is because FA is so rare. There is so much more that comes with it and so much to worry about.

I also want other families to know that they are not alone.

At our children’s hospital, we met a 19-year-old young woman with a different type of anemia who had a few similar physical differences, including her thumbs. Talking with her for just a few minutes helped me more than she’ll ever know. Sometimes knowing someone else understands makes all the difference.

So Much More Than FA

Luna is so much more than her diagnosis.

She’s a happy 1-year-old who loves movies, music, coloring, playing, reading, and learning new things. She has so much positive energy. She’s smart as could be and capable of anything.

She teaches us every single day how blessed we are to have her.

Looking Ahead With Hope

I hope we’ll find a cure or discover ways to make life better for these beautiful FA fighters. They are so strong and go through so much. They deserve every opportunity, and I hope they know how hard everyone is working to make a difference and how deeply they are loved.

To the donors who make research possible:

THANK YOU! Without you, we wouldn’t be able to keep searching for cures or help the FA community come as far as it has. Your support gives families like mine hope for the future.

The post The Sky Is the Limit appeared first on Fanconi Cancer Foundation.

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.”

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