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.

How can we prevent cancer in people with Fanconi anemia? Which changes can help us find it earlier? And how can treatment become safer when someone is diagnosed with cancer?

At the 2026 FA Scientific Symposium in Phoenix, researchers shared progress toward answering these questions, alongside work to protect blood-forming cells and better understand the broader effects of FA. Some approaches are entering clinical studies. Others are helping researchers decide which ideas deserve further testing.

The gathering also brought community experiences into focus. On Oct. 3, FCF held an Externally Led Patient-Focused Drug Development (EL-PFDD) meeting, providing a forum for people with FA, caregivers and bereaved families to share their perspectives. Together, these events underscored the importance of pursuing research that responds to the realities of living with FA.

Community experiences belong in the research conversation

Research can measure changes in cells, tumors and blood counts. Understanding the impact of FA also requires hearing directly from the people affected by it.

The EL-PFDD meeting created a dedicated opportunity to share those experiences and perspectives to help inform future research and treatment development. We’re grateful to everyone who contributed, in person or virtually, and to those who shared deeply personal experiences.

FCF will share reports and meeting recordings in the coming months, providing more opportunities to learn from the discussion.

Cancer prevention is moving into clinical testing

One important step is a study of naproxen and metformin, drugs already approved for use in  other conditions. Researchers at The Rockefeller University and the University of Minnesota are leading a clinical trial to assess safety, tolerability and changes in oral tissue, including biological changes that may precede cancer in people with FA. The study is the first step in understanding whether the drugs can eventually be used to prevent cancer.

Other cancer prevention research for FA starts with a different question: Can we reduce some of the DNA damage that occurs inside the body? Researchers at Cornell University and Boston Children’s Hospital are studying aldehydes, naturally occurring byproducts of metabolism that damage DNA. The research teams are conducting laboratory-based experiments to investigate ways to strengthen cells’ defenses or intercept DNA damaging byproducts before they cause harm. 

Screening is helping researchers ask better questions

The NIH comprehensive cancer screening program has enrolled more than 100 people with FA. Alongside screening for cancers including head and neck, esophageal, skin, and breast, the program collects biological samples over time that can help researchers investigate potential early warning signs of cancer.

Following people and collecting their samples over time is essential. A biological difference becomes more useful when researchers can determine whether it is associated with changes that actually lead to cancer or other serious health problems.

Oral brush sampling of the oral cavity is a crucial early detection technique that is being used in the NIH study. Researchers study whether abnormal amounts of DNA in cells collected with a brush, along with other biological markers, can help identify oral changes that need closer evaluation. The goal is to improve assessment with less burden, while establishing how reliably these tools identify risk.

Lab grown tissue is helping identify treatment candidates

For people with FA, finding a drug that kills cancer cells is only part of the challenge. Researchers also need to understand what that drug does to healthy FA cells.

A research team from Columbia University and Stanford University reported developing lab-grown tissue models, called organoids, that are derived from healthy tissue, precancerous tissue and head and neck cancers from people with FA. The team performed a drug screen using 450 compounds and identified 20 that preferentially killed the cancer cells in the organoid models. 

Although these are laboratory results, and more testing is needed before drug candidates can move toward clinical studies, comparing healthy and cancerous FA tissue gives researchers a practical way to investigate the selectivity that safer treatment requires.

Other work is examining how FA tumors interact with the immune system. Dr. Alfredo Rodríguez, recipient of the 2026 David B. Frohnmayer Early-Stage Investigator Award (pictured below), presented findings on differences in the immune cells within and around FA tumors. Understanding those differences could help guide future approaches to immunotherapy for FA cancer.

New approaches aim to protect blood forming cells

Progress in FA research also includes preclinical efforts to prevent or treat bone marrow failure. Researchers are developing methods to insert a functioning gene into blood-forming cells, with the longer-term goal of enabling correction directly in the body. 

Stanford University and the University of California, San Francisco reported on a new clinical project that will study transplantation before birth using blood-forming stem cells from the mother. The researcher team will establish maternal and fetal safety and whether the approach provides lasting benefit.

These strategies address blood and marrow disease. Correcting blood-forming cells does not automatically correct other tissues affected by FA or eliminate the risk of solid tumors. Continued work on cancer prevention and treatment remains essential.

Shared information can help the whole field move forward

With a condition as rare as FA, no single institution can answer every question alone. FRIENDS, a consortium spanning 19 institutions, is developing shared ways to organize clinical information so researchers can study questions across centers.

In 2020, FCF created the FA Virtual Tumor Board (VTB) program to provide expert advice on cancer treatment for individuals with FA. Researchers from the Rockefeller University, working in collaboration with FCF, reported on a funded outcomes study that is examining VTB specialist recommendations, treatments people received, side effects and results. Connecting those pieces can help clinicians assess how the service is working and where evidence is still missing. Learning from the outcomes of the FA VTB will enable future implementation of best practices for treating FA cancer.

Across these efforts, progress depends on people who contribute samples, participate in studies, share their experiences and support the work. Newly approved research grants will help several of these projects take their next steps. Read our companion article for an overview of the nine October awards and the questions they will help researchers answer.

Want to explore the science further? 

Read on for more detailed findings and methods from selected symposium presentations.

Additional findings presented at the Symposium explored the mechanisms underlying FA, potential therapeutic targets and new tools for studying disease progression. These selected highlights include investigator-reported results, with further validation needed before clinical application.

DNA repair mechanisms and potential therapeutic vulnerabilities

Alberto Ciccia’s team at Columbia University used Cas12a genetic screens to examine more than 27,000 pairs of DNA damage response genes. The work identified synthetic lethal interactions involving FA genes and GEN1, CIP2A, RHNO1, and the FANCM–SMARCAL1 pair. These interactions occur when two defects together kill a cell, even though either defect alone can be tolerated.

The findings suggest potential targets for treatment discovery. In inherited FA, however, healthy tissues also have DNA repair defects. Establishing whether these dependencies can be targeted selectively in cancer cells will be essential.

Agata Smogorzewska’s team at The Rockefeller University presented mechanistic work showing how FANCI–FANCD2 recruits the XPF and SNM1A nucleases to damaged DNA and how repair enzymes can compensate for one another. These findings clarify the coordination required for DNA crosslink repair and how its disruption can contribute to chromosome instability.

Distinctive immune features in FA tumors

Alfredo Rodríguez’s analysis used imaging and computational methods to map immune cells in 33 squamous cell carcinoma samples from people with and without FA. FA tumors showed distinctive patterns of TIM-3-positive exhausted T cells in the surrounding stroma, alongside suppressive macrophages and regulatory T cells. These patterns differed from the PD-1-associated pattern observed in non-FA samples.

The findings raise questions about whether FA-associated cancers may require immunotherapy approaches tailored to their immune environment. They identify potential research targets but do not yet demonstrate clinical benefit from targeting TIM-3 or related signals.

Two approaches to reducing aldehyde damage

Grant Rowe’s work at Boston Children’s Hospital began with an observation of an adaptive ALDH9A1 variant in blood-forming cells from a person with FA who had not developed marrow failure. Modeling the variant increased aldehyde-detoxification activity, reduced endogenous DNA damage and improved blood-cell production. The next steps include screening for enzyme activators and testing their relevance in FA epithelial cells.

Meng Wang’s team at Cornell University is investigating a complementary approach: intercepting formaldehyde before it damages DNA. Preliminary mouse studies suggest that D-penicillamine can trap circulating formaldehyde and reduce formaldehyde–DNA adducts in bone marrow. Screening more than 2,000 compounds identified additional candidates. Further work will test sustained protection against marrow failure and leukemia in FA models and verify how the candidates act.

Gene insertion in blood-forming cells

Branden Moriarity and John Wagner’s University of Minnesota project is developing gene insertion through homology-mediated end joining, or HMEJ. The approach is being evaluated in FA blood-forming cells and mouse models, with the longer-term goal of enabling gene correction directly in the body.

This work remains preclinical and is distinct from the prenatal transplantation study. Both approaches address hematologic disease; neither has established prevention of FA-associated solid tumors.

Emerging investigators and award-winning research

Three poster award recipients presented additional approaches to understanding FA biology and improving risk assessment:

• Basic research award: Abigail Molnar. In FA-derived cell lines, nicotinamide riboside supplementation restored activity of NAD-dependent enzymes and improved markers of DNA damage, replication stress and mitochondrial health. These cell findings support further investigation but do not establish the safety or effectiveness of supplementation in people with FA.
• Clinical research award: Lobna Kammoun. A machine learning model developed using retrospective records from 233 people with FA achieved an internally cross-validated AUC of 0.78 for predicting severe hematologic progression. External and prospective validation are needed before clinical use.
• Translational research award: Jiayue “Wendy” Wu. Mouse-derived oral and esophageal organoids developed progressive precancer-like abnormalities in FA-deficient tissue without added carcinogens. Restoring FA genes corrected sensitivity to DNA crosslinking agents but did not reverse established abnormalities in tissue differentiation, raising questions about the timing of preventive interventions.

The post New Findings, Next Steps: Research Highlights From the 2026 FA Scientific Symposium 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.

The Fanconi Cancer Foundation (FCF) and the American Cancer Society (ACS) have opened the 2026 application cycle for the ACS-Fanconi Cancer Foundation Discovery Boost Grant.

Through this partnership, FCF and ACS are inviting proposals for translational cancer research that addresses the unique challenges faced by people with Fanconi anemia (FA). The grant is designed to advance promising ideas with the potential to improve how cancers in people with FA are detected, prevented or treated.

Scientific scope

Proposed research must be directly applicable to FA-associated cancers, particularly cancers influenced by defects in the FA/BRCA DNA repair pathway. Applications should clearly explain how the work could advance FA cancer research and ultimately benefit people with FA.

Applications are welcome from established FA investigators as well as researchers in related areas of cancer biology who want to apply their expertise to FA. Researchers who are new to the field should demonstrate a clear connection between their proposed work and the grant’s priorities.

Areas of interest include, but aren’t limited to:

• Early detection technologies and biomarkers for FA-related squamous cell carcinomas
• Mechanisms or interventions to prevent FA-related tumors
• Therapeutic strategies tailored to the sensitivity of people with FA to DNA-damaging agents
• New models for studying FA tumor development and treatment response
• High-throughput or systems biology approaches to identify cancer vulnerabilities specific to FA

Preference will be given to projects with a clear path toward clinical application, including collaborations with clinicians, diagnostic developers or pharmaceutical partners.

Both new applications and resubmissions from the previous application cycle will be accepted.

Eligibility

Applicants typically must:

• Work at a U.S. academic institution or eligible nonprofit organization
• Be an independent investigator at any career stage
• Hold a full-time faculty appointment or equivalent position

Applicants should review the complete grant policies and instructions before applying. Applications that don’t align with the scientific scope of the funding opportunity will be returned without review.

Term and budget

Awards provide up to $135,000 in direct costs per year for up to two years, plus 10% in indirect costs. The maximum allowable budget is $297,000 for a two-year project.

Key dates

• Application deadline: Dec. 1, 2026
• Application review: March 2027
• Anticipated award notification: August 2027
• Anticipated grant start date: Oct. 1, 2027

Why this matters

People with FA face an extraordinarily high risk of cancer and can be especially vulnerable to the effects of standard cancer treatments. Progress requires research designed around their specific biology and medical needs.

This partnership combines FCF’s deep knowledge of FA research and community priorities with ACS’s scientific reach and grant-review infrastructure. It also creates an opportunity to bring new investigators and approaches into the FA field while advancing research with a clear path toward better cancer care.

Learn more and apply

Applications are now open. Researchers can review the complete funding opportunity, eligibility requirements, policies and application instructions on the American Cancer Society website.

Questions about the grant may be directed to Doug Hurst, PhD, at doug.hurst@cancer.org.

The post FCF and American Cancer Society Open 2026 Discovery Boost Grant for FA Cancer Research appeared first on Fanconi Cancer Foundation.

Research progress is often described through its most visible moments: a published finding, a clinical trial or a new treatment. But those moments depend on years of less-visible work: researchers must gather evidence, develop the right tools, test promising ideas and determine what is safe before a new approach can reach people.

For those affected by Fanconi anemia, this groundwork is especially important. People with FA face an extraordinarily high risk of cancer and can be particularly vulnerable to the harmful effects of standard treatments.

Three recent FCF investments show how laboratory research and clinical experience work together to enable us to pursue better options.

Exploring whether gene therapy could prevent oral cancer

People with FA face a substantially increased risk of head and neck cancer, particularly cancer in the mouth. Researchers are asking whether gene therapy might one day help reduce that risk before cancer develops.

With FCF support, Markus Grompe and his team at Oregon Health & Science University are testing this idea in FA mouse models. The researchers are studying whether gene therapy can be delivered to tissues lining the mouth and evaluating its safety and potential effectiveness.

This work is preclinical, meaning more laboratory research will be needed before researchers can determine whether this approach should advance toward study in people.

Identifying drugs that may be safer for people with FA

Cancer prevention and treatment both present a central challenge in FA: A drug must not only work against cancer, but also be safe for people with underlying DNA-repair vulnerabilities.

Markus Grompe and Craig Dorrell at Oregon Health & Science University are testing potential cancer-prevention compounds and screening chemotherapy drugs in FA mouse models.

The goal is to build a stronger body of evidence about which compounds may prevent or treat cancer without causing unacceptable harm in FA. This research is also preclinical, with the idea that it will help researchers prioritize the most promising approaches for further study.

Turning shared clinical experience into evidence

Because FA-associated cancers are rare, important information can remain scattered across individual cases and institutions. FCF’s Virtual Tumor Board brings clinicians and researchers together to discuss complex cancer cases and share their expertise.

Now, FCF is funding Agata Smogorzewska and Tamar Berger at The Rockefeller University to take the next step: gathering and analyzing medical information from individuals whose cases were presented through the Virtual Tumor Board.

Many individuals and families have already consented to participate, and information has been shared with the research team for analysis. The project is expected to produce two scientific publications, including the first published analysis of a range of FA-associated cancers discussed through an FA-specific tumor board.

This work will provide the first comprehensive analysis of FA-associated cancers presented through a virtual tumor board housed outside an academic institution. The findings will give clinicians and researchers valuable information about the diagnosis, treatment and outcomes of FA-associated cancers and help influence future cancer care guidance.

Connecting research at every stage

Each project addresses a different part of the same urgent challenge:

• Testing whether oral gene therapy could reduce cancer risk
• Screening prevention and treatment drugs for effectiveness and FA-specific safety
• Turning clinical experience into evidence the field can use

Together, they show why laboratory and clinical research can’t happen in isolation. Questions and experiences from cancer care can help guide research priorities, while laboratory studies can identify approaches that may eventually warrant further clinical investigation.

Across these three projects, FCF has committed $631,164. This is what sustained research investment makes possible: connecting work across different stages so that evidence, tools and promising ideas can continue moving toward safer cancer care.

The post Building the Evidence for Safer Cancer Care in FA appeared first on Fanconi Cancer Foundation.

Living with Fanconi anemia, or caring for someone with FA, brings ongoing uncertainty, complex medical experiences and emotional strain. These experiences affect more than physical health. They can also shape mental health, relationships, daily routines and a person’s sense of safety and connection.

The Fanconi Cancer Foundation is pleased to introduce the Mental Health and Wellbeing Toolkit, a new resource offering practical tools and trusted guidance for people living with FA and those who care for them.

Why this resource matters

Research is helping us better understand the mental health experiences of adults with FA. Nearly half of adults who participated in one recent study screened positive for symptoms of post-traumatic stress. Many also reported symptoms of anxiety and depression, along with fatigue, sleep disturbance, chronic pain and unmet mental health needs.

Caregivers and care partners may also carry significant emotional strain as they navigate complex care, repeated medical stress and uncertainty about the future.

These experiences can feel isolating, but no one should have to navigate them alone. Mental health support is an important part of caring for the whole person and the people who support them.

Practical tools for real-life needs

Developed in partnership with Give an Hour, the toolkit brings together research-informed guidance, community perspectives and exercises that can be used during everyday stress as well as more difficult moments.

The toolkit includes resources to help individuals and caregivers:

• Recognize signs of emotional distress
• Practice self-compassion and manageable forms of self-care
• Navigate isolation, grief and uncertainty
• Identify and strengthen support systems
• Talk with children about mental health
• Prepare for emotional or medical crises
• Find a mental health professional who understands trauma and medical complexity
• Explain FA-related experiences and care needs to a provider

The toolkit also includes worksheets that can be completed, printed or shared, including an emotions tracker, support system map, crisis response plan and mental health storyboards for individuals with FA and caregivers.

For moments when everything feels overwhelming, the toolkit begins with a simple PACE exercise: pause, act on one simple step, connect, engage in self-care and engage in extra support.

Use the toolkit in the way that works for you

You don’t need to read the toolkit from beginning to end. You might begin with one exercise, return to a section during a challenging time or share a provider resource with a counselor or member of your care team.

The toolkit is grounded in choice, pacing and safety. Some topics may bring up strong emotions, and it’s OK to pause, skip a section or reach out for support.

FCF advocates Erica Williams and Faith Barbe provided feedback to help ensure the resource reflects the experiences and needs of the FA community. Clinical and research experts also reviewed and contributed information. Finally, we thank partners Give An Hour for providing much of the resources we could adapt to the FA community.

We hope this toolkit helps you feel more prepared, more supported and less alone in whatever you’re carrying.

You can also visit FCF’s mental health webpage to learn about counseling, one-on-one coaching, research and other resources available to the FA community.

This toolkit is an educational and supportive resource. It isn’t a diagnostic tool or a substitute for individualized medical or mental health care. If you’re in the United States and experiencing emotional distress or need immediate support, call or text 988. If you’re outside the U.S., visit FindAHelpline.com.

The post New Mental Health and Wellbeing Toolkit Offers Practical Support for the FA Community 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.

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