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.

The De Los Santos family first experienced the complexities of Fanconi anemia as they endured the devastating loss of their daughter, Gracie, who passed away from complications following her bone marrow transplant. Later, genetic testing revealed that Katherine would be born with FA as well. 

Katherine faced bone marrow failure at age eight, and thankfully her health stabilized after a successful transplant. She went on to pursue her academic dreams, earning an undergraduate degree in Biology with a minor in Chemistry. When the pandemic struck, she returned home and immersed herself in healthcare. She worked as a medical assistant in pediatrics and cardiology, all while contributing to her community through volunteer work with Be The Match, The Icla da Silva Foundation, and mission trips with her church. 

Her passion for healthcare led her to pursue a master’s degree at Mercer University last fall, where she began the Preclinical Sciences program with the goal of attending medical school. 

However, just five days before Christmas, her path took a sudden turn when she was diagnosed with esophageal cancer during the Fanconi Anemia Cancer Screening Study, conducted at the NIH. 

This cancer diagnosis changed Katherine’s life. It felt like any hope to become a doctor and pursuing her passion came to a standstill. 

Dr. Giri and the team at the NIH guided her through understanding her health. Their attentiveness and expertise made her feel truly seen and heard, especially after her cancer went undetected despite previous doctor visits. Though receiving this diagnosis and treatment paused her aspirations, the outstanding care she received reignited her passion to make a difference in the world of healthcare. 

“Cancer may have affected my body, but it has not conquered my spirit. It has taken some strength, but never my joy or resilience. I am here today, stronger and more determined than ever.” 

Now in recovery, she is back on track with her studies and is preparing to apply to medical school this year. The profound impact that compassionate, knowledgeable healthcare providers can have on a patient’s life stayed with Katherine since her cancer diagnosis. Recognizing that many rural communities, including those in her home state of Georgia, lack access to high-quality healthcare, she is determined to make a difference by serving children in these underserved areas. 

We are honored to support Katherine as she pursues her goals by presenting her with the 2024 Winn/Byrd Award. We are confident that Katherine will continue to make an impact within healthcare and undoubtedly become a resource to patients and children in rural communities and beyond, ensuring they have access to the care and attention they deserve. 

Robin Lewis Receives Second Place

This year, the committee honors Robin Lewis who has made remarkable progress, alongside his wife, in establishing Matches on the Map. Through this initiative, they have traveled across South Africa, recruiting bone marrow donors and raising awareness about the need for lifesaving matches. Robin’s goal is to sign up 1,000 potential donors each year while creating sustainable recruitment efforts at universities and schools that will continue long after their journey. Additionally, they are integrating FA support groups within South Africa as they continue to grow their educational talks and recruitment drives. We eagerly anticipate seeing the lives they will touch. Congratulations, Robin!

The post Katherine De Los Santos Receives the 2024 Winn/Byrd Award for Adults with FA appeared first on Fanconi Cancer Foundation.

A bit about me 

I received an early diagnosis in late 1997 from Dr. Arleen Auerbach through DEB chromosome breakage tests. This diagnosis was later confirmed in early 2000 after the birth of my sister, who does not have FA. Subsequent testing identified that I had FA, subtype FANCA. I credit my parents, both molecular geneticists, and the medical team present at my birth for this timely diagnosis.

I’d say I had a very happy childhood. My parents encouraged both me and my sister to have a number of hobbies, most of which I have either kept up with or added to as I grew up. I started playing the cello when I was six years old, and while my right hand gave me some trouble with holding the bow, I think I did very well! I continued playing cello up until I graduated from my undergraduate university. I also enjoy reading, sewing, knitting, crochet, painting, and jewelry making and repair. I am a huge fan of cats in general and my family’s cats in particular. I hope that when I am settled in one place for longer than two years that I will be able to welcome cats into my own home.

Keeping up to date with FA advancements

I am very lucky that I am one of a growing number of FAdults who have not undergone bone marrow transplantation (BMT). Because I was diagnosed so early, my parents were able to keep a very close eye on my health, and enrolled me in clinical studies in order to push BMT as far into the future as possible. Their reasoning was that BMT technology and procedures would advance quickly, and the longer we were able to avoid BMT, the better outcomes I would have. I agree with this reasoning, as BMT outcomes and survival rates have improved phenomenally over the past 20 years. At around the age of 13, I began taking the androgen Oxandrolone to stimulate bone marrow function. Due to my positive response to the medication, I have continued its use, thus far averting the need for a bone marrow transplant.

I am currently enrolled with Dr. Neelam Giri’s Fanconi Anemia Cancer Screening Study at the National Institutes of Health, which aims to improve cancer screening for FA patients, as we are at risk of several kinds of cancers due to the way FA works in the body. I’m very proud to be a part of this study, as cancer is an increasing concern for those of us who have survived to adulthood, especially post-BMT. As part of this study, Dr. Giri and her incredible team continue to screen me not only for signs of developing cancer, but also for issues with my bone marrow, for which I am incredibly grateful. Not only does this study allow me to get regular screenings – something which I otherwise wouldn’t be able to afford as a relatively poor graduate student – it’s also a convenient 45-minute metro ride from my current home.

My personal interest in FA research, mental health, and advocacy

As a student in the field of public health, I hold a special interest in the research conducted by Dr. Giri and her team, Dr. Lindsey Romick-Rosendale’s investigation into metabolic alterations in FA, and the research led by Dr. Megan Voss and Dr. Kathleen Bogart on the psychosocial experiences of FAdults. Of these studies, the latter holds particular significance to me, as I have long advocated for a greater emphasis and support for mental health in the context of living with FA.

The dedication of these researchers and the insights they provide have not only motivated me to pursue a Master of Public Health but also inspired me to give back by becoming a member of the FAdult Council and participating in the emerging FA Advocacy Program. 

Through the FAdult Council, I have the opportunity to support the FCF staff and board of directors by offering insights gained from my experience as a member of the FA community. This enables us to assist FCF and researchers in delivering the best resources, knowledge, and care to the entire community. The Advocacy Program operates on a similar premise, allowing FAdults and FAmilies to share their experiences and stories with scientists, facilitating the creation of focused studies that benefit the entire community.

I’m honored to help advance these initiatives and encourage you to participate where and however you can!

The post From Diagnosis to Advocacy: My Story with Fanconi Anemia appeared first on Fanconi Cancer Foundation.