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.

A Global Commitment to Care

Born in Zanzibar and now living in New York, Fatma has dedicated herself to improving how healthcare is experienced, not just delivered.

She currently works as a medical scribe at an OB-GYN clinic, supporting patients through deeply personal moments such as high-risk pregnancies and cancer screenings. She also serves on the Patient and Family Advisory Council at the Meyer Cancer Center through Weill Cornell and NewYork-Presbyterian, helping to make hospital systems more compassionate and inclusive.

“Healing extends beyond treatment plans,” Fatma shared. “It lies in creating spaces where patients feel safe, seen, and empowered, even in the face of uncertainty.”

In her hometown of Zanzibar, Fatma has volunteered in rural clinics, offering encouragement to people who often face limited access to care. “A simple act of kindness,” she said, “can radically shift a patient’s experience.”

Leading Through Empathy

Fatma’s leadership isn’t loud; it’s deeply human. She leads by listening: to patients, to researchers, and to peers in the FA community. Fatma received many nominators for this award who describe her as “a bridge between the patient world and the scientific world,” someone whose voice and empathy “improves how we conduct research, deliver care, and reminds us why we do this work.”

Her brother, Hisham, sees that same strength at home.

“Fatma often leads by example. Throughout her life, she holds others to the same standards she holds herself which is often inspiring. She is always transparent, empathetic, and leads from within.”

Whether in a research setting, a hospital, or a community meeting, Fatma’s steady presence brings people together and reminds them that care begins with compassion.

A Voice for Advocacy and Hope

Advocacy has become a defining part of Fatma’s journey. Through her work with FCF and the broader rare disease community, she’s used her voice to raise awareness and build connection.

“Having been a patient myself, I know how heavy those moments can feel,” Fatma shared in her acceptance speech. “It means a lot to ease that weight, even in small ways.”

She also reflected on the people who have guided her:

“I wouldn’t be standing here without the people who have stood beside me. You’ve shown me what resilience looks like and reminded me why it’s worth continuing to speak up and fight for change.”

Her humility, gratitude, and clarity of purpose inspire everyone around her, a reflection of the FA community’s strength and shared hope.

Looking Ahead

For Fatma, this recognition is not an ending but a beginning. She plans to attend medical school and continue working toward her dream of transforming healthcare for underserved communities around the world.

Her mother, Zaitoon, summed it up perfectly:

“Fatma demonstrates leadership in empowering others and showing them that Fanconi anemia is not a reason to let your dreams drift away. Anything is possible if you truly set your mind to it.”

As she moves forward, Fatma carries the legacy of Amy Frohnmayer Winn and Christopher Byrd, two leaders who lived with courage, joy, and purpose. She continues that legacy with grace, empathy, and a belief in the power of human connection.

Congratulations, Fatma. Your compassion, strength, and vision inspire us all!

Louise Dalgleish Receives Second Place

Louise strives to shift perceptions of adults with Fanconi anemia beyond their medical conditions and works alongside clinicians and researchers to improve patient experiences. She’s passionate about highlighting the ambitions and everyday challenges faced by individuals with FA, advocating for understanding, equity, and support within the medical community.

Louise is also deeply committed to increasing accessibility and inclusion for LGBTQ+ individuals in healthcare. Through her recent collaboration with Pfizer’s OUTpatients campaign, she shared her experience as an LGBTQ+ person living with a rare disease, bringing visibility and awareness to an often-overlooked intersection of identities.

A dedicated member of FCF’s FAdult Council and Advocacy Program, as well as a spokesperson for Fanconi Hope, Louise uses her voice to uplift others and inspire change. Congratulations, Louise! Your courage and advocacy strengthen the entire FA community.

The post Celebrating Fatma Issak, 2025 Winn/Byrd Award Recipient appeared first on Fanconi Cancer Foundation.

My name is Kelly McKenna, and I’m a single mom to two amazing kids. One of them is an eight-year-old boy who has Fanconi anemia (FA). Logan’s medical journey started during my pregnancy at the 20-week anatomy ultrasound. They were unable to locate his kidney at the time, though at birth, it was found to be misplaced in his pelvis. He had a variety of other things going on as well—the pelvic kidney, hypospadias, a sacral dimple, café-au-lait spots, short stature, feeding problems, and growth and speech delays, just to name a few. He was always extremely low on his growth charts, and I was repeatedly told by doctors that he was otherwise healthy, that his growth charts were following the curve (albeit a low percentile), and that some of these things he would likely outgrow with time, while others can just happen.

I couldn’t shake the feeling that all these various medical issues had to be somehow related, and I would say that is where my advocacy journey began—years before I joined FCF’s Patient Advocacy Program, years before it even started. My personal advocacy journey began as a mom just trying to find answers about her son. People talk about a mother’s intuition, and I don’t think I fully understood it until I experienced it myself, but I just knew that something was causing all of this. I pressed and pressed for referrals, trying to find someone who could explain everything going on with Logan. And after being seen in ten separate specialties by thirteen doctors across countless appointments, a seizure was what finally landed Logan with the test that would diagnose him with FA. Whole exome sequencing suggested he had FANCA, which was later confirmed with chromosome breakage tests.

We are very fortunate so far, and I do not take that for granted. Logan’s counts have been stable, his bone marrow biopsies clean, and to most people, he just seems like a normal eight-year-old boy. He plays basketball, has friends, and loves Pokémon and Minecraft. But underneath that lies his FA and a constant state of worry about what comes next. To me, that’s the hardest part of the journey right now—knowing what’s potentially to come and, aside from taking proper precautions and following up with his specialists, knowing that there’s nothing I can do to stop it. As a parent, you just want the best possible life for your children—to care for them and watch them grow into happy, healthy adults. Knowing what’s looming with FA and knowing there’s nothing you can do to prevent it can feel crushing.

I’ve been advocating for Logan his whole life, not just through his FA journey but through an autism diagnosis as well. And through all of this, I’ve learned that if you want people to listen, if you want to find answers, if you want to bring awareness to a disease that most people have never heard of, you must speak up and be persistent. The FCF Patient Advocacy Program has allowed me to do that on a much larger platform than I could on my own. I’ve had the opportunity to work with a pharmaceutical company on an FA-centered research study and weigh in with a caregiver’s perspective on life with FA. I’ve had the chance to make my voice heard and share our story—to tell other families, especially single parents, that they aren’t alone in this and to always trust their gut and push for answers when it comes to their child. We were lucky enough to attend the FAmily Retreat last summer, and seeing all the other families and children affected just fueled my passion as an advocate even more.

Life with a loved one who has FA can often feel like you’re just waiting for the other shoe to drop. But it can also be so much more. It’s learning to live in the moment and not take any time for granted. To take full advantage of your health. It’s full of love and friendships and discovering that you’re part of a much larger FAmily that all wants the same thing—to find better treatments and ultimately a cure for this disease. The FCF Patient Advocacy Program has given me the chance to become a bigger part of this community and step up to represent it to others. My biggest hope is that I can play a small part in advancing awareness and getting us one step closer to a cure for Logan and all of those with FA.

The post From Intuition to Action: Advocacy and Hope with FA appeared first on Fanconi Cancer Foundation.

Our lives changed forever the day we learned our son Eli was diagnosed with Fanconi anemia. Just days earlier, we had celebrated his fourth birthday with family and friends, blissfully unaware of the journey ahead. When faced with this devastating diagnosis, we were overwhelmed by fear, uncertainty, and the lack of available information and support.

In our search for hope and greater understanding, we found the Fanconi Cancer Foundation (FCF), and with it, an invaluable community of families, doctors, and researchers. Our first FAmily Meeting at Camp Sunshine in Casco, Maine, was transformative—a lifeline of knowledge, support, and friendship that helped us navigate FA with determination and hope.

The Challenges of Caregiving

As a caregiver, it’s easy to feel powerless when managing a disease like FA. The endless waiting and the unknowns of the future weigh heavily on your heart. Watching your child endure grueling treatments—the chemotherapy with its harsh side effects, the struggles at school, the battle against constant fatigue and appetite loss—can make you feel like everything is out of your control.

Yet, even though I can’t change the diagnosis, there is immense power in deciding how to respond. Loving my son unconditionally has always been my greatest role as his caregiver, but I wanted to do more—to make a bigger impact and create meaningful change. I needed to fight for him. That’s why I became an advocate for FCF.

Becoming an Advocate

FCF’s Advocacy Program allows me to help others understand the profound challenges of FA from both the patient and caregiver perspective. I’ve collaborated with researchers and doctors in clinical trial programs, ensuring that family voices are at the center of critical decisions. I’ve worked with companies developing treatments for FA, guiding them in crafting communications that speak directly to caregivers.

Being part of the advocacy program is deeply meaningful and rewarding. Every time I share our story with scientists, clinicians, and industry leaders, I hope it makes their work more personal and impactful. My dream is that these collaborations lead to better outcomes for FA patients and more support for the caregivers who love them unconditionally.

Beyond advocacy, I’ve found purpose in fundraising for FCF. Over the years, FCF has empowered me to raise funds for research and, ultimately, a cure. We started with small events—an ice cream social, a dunk tank fundraiser, a pie-throwing contest at my workplace, a penny war at Eli’s elementary school. And while none of these were extravagant, they each made a difference. Every single dollar raised is a step toward hope, not just for Eli, but for every family affected by FA.

My daughter, Chloe, and I also participate in the Postmarked for Love program, creating heartfelt cards to spread joy, encouragement, and love to others in the FA community. These small acts remind me that connection and kindness can shine even in the darkest times.

The Power of the FA Community

The FA community is incredibly special, and I am endlessly grateful to FCF for fostering such a compassionate and collaborative space. In a world where rare diseases often feel isolating, FCF brings us together. This foundation is not just about research—it’s about people, about FAmilies, about hope.

To those who support FCF, whether through donations, research, advocacy, or simply showing up for families like mine, thank you. Your generosity fuels groundbreaking research, provides critical education, and creates a network of strength for families facing FA. Because of you, we can believe in a brighter future for our children. And for that, I am forever grateful.

The post Collaborating for Progress: A Parent’s Journey with FA and Advocacy appeared first on Fanconi Cancer Foundation.