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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The much adored little sister of the family

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

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

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

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

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 daughter Emily was just six years old when we learned she had Fanconi anemia (FA). After Emily had a series of nosebleeds and unexplained bruises, we took her for routine bloodwork right after Christmas 2021. A day later, her pediatrician called us urgently to say Emily’s blood counts were dangerously low and we needed to bring her to the hospital immediately. While there, she had a bone marrow biopsy and was referred to hematology. After weeks of testing to rule out other conditions, we received confirmation in January 2022—Emily had FA. We were stunned.

Emily had a bone marrow transplant in May 2022. While that procedure was life-saving, it isn’t a cure. This was a turning point for us. It showed me not only what she was dealing with but also her incredible strength at such a young age. It also reminded us that just because she doesn’t look sick, doesn’t mean there isn’t something lying under the surface. She may act like a “normal” kid, but she’s constantly going to doctor appointments and carries an underlying worry of getting sick.

We’re constantly worried about symptoms and about avoiding anything that could increase Emily’s cancer risk. Because of her experiences with emergency hospital visits, Emily is now very afraid of doctors. Any illness or injury can feel frightening for her and for us.

And yet, Emily is much more than her diagnosis. She’s an athlete and an artist who loves playing soccer and basketball. She creates paper dragons for her friends, enjoys drawing, and is a proud Swiftie.

I hope that research continues to expand options and extend life for people with FA. Research brings hope and longevity for those who deal with FA and their families

To the FCF donors, thank you, thank you, thank you for all you do! The FA community is nothing without your support. The Fanconi Cancer Foundation has been such a source of information and support. We appreciate this organization more than you will ever know.

The post When Childhood Meets FA: Emily’s Story of Courage appeared first on Fanconi Cancer Foundation.

The Coley’s Cause Memorial Golf Tournament, founded by the Levine family in 2005, is an annual tribute to their daughter and sister Nicole “Coley” Levine, who passed away from FA complications at the age of six.

“If there was ever a child who possessed the spirit and toughness to endure the perils that this disease imposes, it was Nicole,” say her parents, Tood and Kristin Levine. “Anyone who had the pleasure of knowing her instantly saw her as a feisty child who despite her small stature, always insisted on doing things her way and to never be left behind.” 

What started as a small local fundraiser in memory of an incredible little girl has evolved into a powerful movement uniting friends, family, neighbors, and supporters in pursuit of a future with better outcomes and brighter hope for families affected by FA.

“We never imagined our tournament would be selling out for 21 years. The commitment and passion of our golfers, sponsors and volunteers have for making an impact on FA in Nicole’s memory is astounding. The vibe that surrounds Coley’s Cause is unique and palpable.” – Todd and Kristin.

2025: A Record-Setting Year

The 2025 event marked a milestone, not only in longevity but in impact. This year’s tournament raised a record-setting $39,000 for FCF, pushing the 21-year total to more than $547,000 in FA research funding! Additional contributions this year included $1,500 toward the Nicole Levine Memorial Scholarship and $2,000 to support local families facing medical challenges. Together, the event’s lifetime giving total now exceeds an incredible $633,000!

These numbers tell a story of generosity, but they also speak to something deeper: a community that shows up year after year in support and love for Coley, whose spirit continues to inspire meaningful change. For every event, the Levine family invites families impacted by FA, healthcare professionals that had an impact on Coley’s FA journey, and even FCF staff to speak to the progress being made and the impact this event has on the bright future we all strive for. 

A Community with Heart

This year’s tournament was filled with warmth, laughter, and reflection. As always, guests showed up dressed in orange for a vibrant tribute to Coley and her favorite color. The heart of the day, however, came from a powerful speech delivered by Amanda Barber, an FA parent, who stood alongside her daughter Emma and shared a message of perseverance, gratitude, and hope. As one attendee put it, “dry eyes were hard to come by.”

Moments like these are what make Coley’s Cause more than a fundraiser. Rather, it can be best described as an experience; where golf is simply a sideshow, taking a back seat to a time where friends reconnect, stories are shared, lives are honored, and a vision for the future takes shape.

A Lasting Legacy

Thanks to the Levine family and the Coley’s Cause community, FCF has been able to invest in critical research aimed at improving treatments and expanding life expectancy for those with FA and associated cancers. These funds have supported initiatives focused on cancer prevention, gene therapy, and quality-of-life improvements which directly impact the lives of families facing this disease.

With Gratitude

FCF remains deeply grateful for the Levine family’s tireless dedication. Not only do the Levine family and their community raise funds for FA research each year, but they are also deeply dedicated to staying up to date with progress in the field and have passed this passion to their incredible supporters. Their commitment has not only raised awareness but has also catalyzed meaningful progress to create opportunities for discovery, hope, and healing.

To every sponsor, golfer, volunteer, and donor who made this event a success: thank you. You are part of a legacy that continues to shape the future for individuals with FA. And to the Levine family—Todd, Kristin, Marissa, Travis, and Nicolas—thank you for turning grief into purpose and for leading with such compassion and determination. Your dedication truly changes lives!

For additional information about Nicole, her journey with FA, and the Coley’s Cause Memorial Golf Tournament, please visit: www.coleyscause.com

The post Coley’s Cause: Decades of a Community Committed to Progress appeared first on Fanconi Cancer Foundation.

When Annzie was six, what started as a routine well visit turned our world upside down. She had always been small for her age, but that visit revealed more: recurring infections and low platelet counts that led to urgent bloodwork. We were referred to hematology, and that began our FA journey.

Looking back, the signs were there. She was born with a malformed thumb. She had slow growth, even in utero. We had recently learned about her hearing loss, and then her platelets were low. Hematology ordered genetic testing, and we waited nine long weeks for results. During that time, her bone marrow failure became more obvious, with all her counts dropping. I remember feeling like we had discovered it just in time. Any sickness or injury could have changed everything.

Eight months after diagnosis, Annzie had a bone marrow transplant. We are still less than a year from her diagnosis, and it has completely rocked our world. I wish more people understood the severity and complexity of FA. Even many doctors do not fully grasp how sensitive their bodies are. If a medication has a rare side effect that most people never see, our kids are often the ones who will experience it. And transplant is not a cure.

Our family was separated for many months during and after transplant. While Annzie still has weekly appointments, we are so happy to be home together again under one roof. She still can’t be around crowds yet, so in order to keep up with the other kids, we have to divide and conquer almost daily. It truly has affected all family members. 

One of the most meaningful moments for me during this entire journey was when we found out my oldest daughter was a perfect 10/10 match for her sister. In that moment, I felt God reminding us that He has taken care of every detail. This diagnosis may have surprised us, but it was not a surprise to Him.

I will never forget flying home after Annzie’s first bone marrow biopsy. We hit turbulence, and she grabbed my hand and asked if we were going to be okay. I told her yes. When she asked how I knew, I said, “We just have to trust the pilot.” And that is what we are doing, trusting God through this journey.

Annzie has always been our wild child, and we love it. She sings, she dances, and “This Girl is on Fire” is her anthem. She loves her cows and her dog, riding 4-wheelers, and swimming. I’m pretty sure she could already get a nursing degree at the age of seven, but she wants to be an artist or a rockstar. She does not even realize how much of a rockstar she already is!

My family and I want to thank everyone who supports FA research. Not that long ago, kids with FA were not making it past their first decade. Now there is so much more hope. We cannot wait to see the progress still to come.

We are also so thankful for the FA community. Advice is helpful, but nothing compares to connecting with families walking the same road. More than anything, I hope for a cure. For FA, and for cancer.

The post Our Wild Child, Our Rockstar: Annzie’s Story appeared first on Fanconi Cancer Foundation.

At the Fanconi Cancer Foundation, we’re honored to share the voices of people living with FA and their families. Their stories remind us why research, support, and community matter so deeply. Today, we’re sharing Mariano’s journey in his own words—reflecting both the challenges of FA and the strength to keep moving forward.

For me, Fanconi anemia (FA) has always been part of my family’s story. My youngest sibling was diagnosed at age 12. Recently, I received my own diagnosis, something I never expected.

My journey started with an emergency trip to the ER. Suddenly, I was losing the ability to speak clearly and could no longer use my left arm and leg. After a biopsy, I was diagnosed with FA this past April. I never thought I would ever have to deal with something like this. My doctors have shared that I may also have FANS, which is relatively new. And there is no cure.

Life with FA

Living with FA is complicated. Every day, I carry the fear that the tumor will return, and that next time things might not go as smoothly. I’m dealing with low vision, issues with coordination, and I cannot work.

Some moments are impossible to forget: photos from my surgery after my tumor was removed, and images of my younger sibling in the hospital after their biopsy. These memories remind me of both the pain FA brings and the resilience we carry.

I’m living life one day at a time. I recently adopted a kitty, who is teaching me how to take things slowly, how to do things one day at a time, and it took a lot for me to do this video, especially because I’m someone who is very happy go lucky, but I’m also someone who is private. This is my way of opening up to people.

I wish people understood that FA is often invisible. On the outside, you may not see it. But it cuts deep, requiring immense sacrifice from every member of the family.

My Outlook Moving Forward

Right now, my hope is to stay strong enough to finish my master’s program. Beyond that, I want to keep learning and sharing what I know about FA, so that more people understand this illness.

I am a poet, a writer, and a storyteller. Last year, I published a book, and I’m now working on my second, an anthology. I’m also a student, and an older brother to a young man with FA and special needs. I’m a DACA recipient. I’m here. I’m present. I am more than my current mental state, and more than this diagnosis.

To those who support FA research: your generosity matters. You may not see the impact right away, but it’s there. Every single contribution helps move research forward and gives people like me the chance to pursue our dreams and bring a brighter future to life.

The post My Unexpected Journey With FA appeared first on Fanconi Cancer Foundation.

Name: Meng Wang, MD, PhD, FRCPath

Institution: Division of Nutritional Sciences, Cornell University, Ithaca, USA

Area of expertise: Fanconi anemia, DNA damage, aldehyde metabolism

My work:  

My lab aims to better understand what causes DNA damage in individuals afflicted with Fanconi anemia. During my postdoc with Dr. KJ Patel in Cambridge, UK, I became deeply fascinated by formaldehyde as an endogenously produced toxin that can cause DNA damage, leukemia, and accelerated aging of blood cells. Formaldehyde is especially toxic to Fanconi anemia patients due to their loss of protective mechanisms against formaldehyde-induced DNA damage. Building on this foundation, my lab at Cornell University now addresses two major questions: defining the biological factors and metabolic pathways that impact formaldehyde levels in the body, and devising novel therapies to reduce formaldehyde toxicity. By addressing these questions, we aim to develop preventative treatments for bone marrow failure and cancer in Fanconi anemia patients.

What motivates me to work on FA:  

When I was in clinical practice as a hematology specialty registrar (equivalent to hematology-oncology fellow) in the UK, I had the privilege of caring for young adults with leukemia, including individuals with Fanconi anemia. Witnessing the devastating impact of this disease on patients and their families motivated me to pursue postdoctoral research on this condition. I was fortunate to be awarded a Cancer Research UK fellowship to work with Dr. KJ Patel on aldehyde biology in Fanconi anemia. During my fellowship, I realized that our understanding of what causes DNA damage in Fanconi anemia remains limited. This insight convinced me that identifying and reducing these DNA damaging factors could offer real hope for preventing cancers in these patients.

When I’m not in the lab, you could find me: 

My family and I love living in Ithaca as we get to work in a great academic institution with beautiful natural surroundings. I enjoy taking my two kids swimming in the lake and playing in the parks followed by cooking them a good meal (as long as they eat it). My wife and I recently joined our local Finger Lakes Running Club where we run along spectacular gorges and lakesides. Despite the cold winters in Ithaca, you might also find me in Cornell University stadium supporting the men’s lacrosse team.

Anything else you want FA families to know?  

One of the most rewarding experiences in my career has been attending Fanconi Cancer Foundation (FCF) meetings to discuss my research directly with Fanconi anemia patients and their families. The excitement and interest from FA families in our research is both overwhelming and humbling. I particularly value how these families relate to research through their personal lived experiences, such as insights into the dietary patterns and food preferences of FA patients. This type of information injects new ideas into our research and drives us toward better treatments for Fanconi anemia.

The post Behind the Research with Meng Wang appeared first on Fanconi Cancer Foundation.