With a deep personal connection to the cause, how did you decide to partner with Fondation ARC to launch the Ella Toulouse Foundation, and what made them the right partner for your mission to support research for adolescent and young adult cancers? What do you feel gave you the strength to create this project?
We are indeed very connected personally to the cause. I’ll start by giving you a little background. We are a French-American family. We have four children and live in Paris. Our kids grew up here.
In April 2020, our wonderful 23-year-old daughter Ella was stolen from us – she died from a very aggressive and cruel cancer that started in her sinus and spread like wildfire into her brain and lungs. It’s like it just came out of the blue. She’d been living her young adult life, making plans for the future, and “got a cold”. Her sinuses were congested. Then she started having mild headaches. Nothing really out of the ordinary but it did drag on and didn’t go away with antibiotics.
Of course she wasn’t actually dealing with a recalcitrant sinus infection. It took several doctors, increasingly bad headaches and over 6 weeks to get a proper diagnosis. Ella died barely three months after she was diagnosed with SMARCB1-deficient sinonasal carcinoma. The treatments she received – chemo and radiation – were totally ineffective.
Ella got this horrible tumor- from what science understands today – because one single gene known as the SMARCB1 gene was silenced in one cell in her left ethmoid sinus. Why or how remains a mystery. Scientists understand that a properly functioning SMARCB1 gene plays an essential role in healthy cell division and in keeping tumors at bay, and that when it is not functioning properly a tumor can grow, but for now, there aren’t any truly effective treatments.
Cancers like Ella’s and most cancers that occur primarily in adolescents and young adults are not due to environmental factors. We don’t know why they happen. Random bad luck? A developmental glitch in utero that takes years to manifest itself? Are they older people cancers that show up early for some reason, or, on the contrary, pediatric cancers that the body has kept in check until something happens and it no longer can? What is going on in the immune system in this transitional age group, that is neither pediatric nor adult? Research into AYA cancers, as cancers in the adolescent and young adult age group are known, is terrifically underfunded and understudied.
Losing a child to cancer is so big, so cosmic that it is hard, if not impossible, for people who haven’t to understand. I don’t have words to describe what Ella went through as her tumor took over her body and brain. Or what it was to accompany her during her illness and then cope with the trauma and pain after her death. You bring your child into this world, you love them more than anything, you do everything you can to guide them into adulthood… and then you find yourself utterly powerless as cancer steals them away.
This is not the time or place to get into all this, but I will say that when your child dies you’re projected onto an unknown planet. You have no choice but to figure out a way to go forward in a world that no longer makes sense, where you don’t fit in. It is a very lonely place to be.
Ella as a child, with her sister. Courtesy of Cassie Toulouse.
After Ella died, one of the few things that was clear to both my husband Jean-Baptiste and myself is that her death and our family’s tragedy could not be in vain. We needed to make something positive come out of it, for her sake and for ours and for others thrown into this particularly cruel cancer world. We started out, in 2022, by creating an association called SMARCB1 Hope which is dedicated to SMARCB1-deficient cancers, whether they are in the sinus like Ella’s or in other parts of the body.
These cancers are of course rare and the few scientists studying them are spread out all over the world. Plus, they don’t necessarily communicate with one another. We wanted to foster a SMARCB1 cancer community, to encourage international collaborative research and provide information and support to patients and their families. We started by hosting a three-day symposium on SMARCB1 cancers with about 30 researchers, from Europe, the US, the UK. It was a great success.
Following the symposium, we raised some money – largely from family and friends – to help fund two SMARCB1 research projects we’d identified here in France, one at the Curie Institute and the other at Gustave Roussy.
But as we became more familiar with fundraising and the workings of the cancer research world, we started to see the inherent limitations of how we were going about things. Our fundraising efforts were always going to be very limited if we focused solely on SMARCB1 cancers. They are just too rare, and there are just too few patients and too few scientists out there studying them. Unless a billionaire somewhere finds themselves in our unlucky shoes and decides to donate a lot of money to the cause, we would never be able to make a significant and enduring impact for patients. Plus, we are not scientists. How could we fully understand and contextualize and select the most promising research to help fund?
We concluded that we had to broaden our scope and federate. We started entertaining the idea of working to support AYA cancer research more generally, all the while continuing our SMARCB1 community building and patient guidance and support work with SMARCB1 Hope. Patient support work is extremely important to me.
The biological and clinical characteristics of cancer in the AYA age group are unique and for the most part not due to environmental elements. Research into AYA cancers is very fragmented and gravely underfunded, despite rising incidence numbers and survival improvements that lag behind those seen in pediatric and older patients. Progress in treating AYA cancers will only happen if we encourage cross-fertilization among different AYA cancer researchers who have different know-hows, specializations and experiences to share. There is so much to be done.
We concluded that we’d have a much greater and enduring impact for young people with cancer if we joined forces with a bigger, more established organization interested in the AYA cause, one with a developed infrastructure, the ability and interest to bring what we set out to do to another level, that would dedicate resources to raising awareness of cancer in the AYA population, have scientific committees to attract, evaluate and select the most exciting and promising research projects, have greater funding potential…
As I said, we live in France. We approached a couple of medical research foundations here with our ideas. A lot of people looked askance at our approach. When we met with Fondation ARC, though, things were different. They were intrigued by what we were doing. They’re dynamic and open-minded. They were interested in discussing what we could potentially build together in this long-neglected AYA space. In hindsight, they were by far the most natural partner: 100% focused on cancer, known in France but also abroad and champions of international collaboration, a superb and truly dedicated team, international scientific committees, know-how, you name it…
It took about a year to hammer out how to work together and how The Ella Toulouse Foundation for Adolescent and Young Adult Cancers would function under the aegis of the Fondation ARC, but we did it, and are thrilled with how things are advancing! Together we launched in January 2026 our first research grant call for AYA cancers and 5 different projects have been selected to co-fund.
So what gives me the strength to do this? It’s very simple and, of course, not simple. It’s Ella who gives me the strength. Ella was not her tragic cancer death, she was a vibrant, creative, original, brilliant young woman whose life was cut short. She and her legacy have so much to offer and teach us. She would be furious and deeply upset to see that her death brought nothing but sadness and darkness and inertia.
When someone you love dies, your relationship with them doesn’t end. In fact, it grows and evolves. I feel Ella by my side every day. Together we need to do what we can to help and change the course for other young people touched by cancer.
Ella and Cassie, courtesy of Cassie Toulouse.
This is where I draw my strength from, from Ella, and from all the other young people out there. I feel like she is with me every day, giving me the strength to carry on. And there is another thing I want to say, because that I think it’s really important for people to keep in mind.
Ella summed it up perfectly shortly after her diagnosis: “the question is not ‘why me?’, it’s ‘why not me??’ ”. So true. Cancer in young people is not just something that happens to “others”, stories you read or hear about and then can forget. It is a devastating reality we cannot ignore.
After the fact, it must’ve been hard to figure out where to start. What was the process to mobilize your contacts and begin fundraising?
Yes, it certainly was. We had everything to learn! We didn’t start this journey right after Ella died. That wouldn’t have been possible. It must have been about 18 months later when we started reaching out to different people here in France and in the US – scientific researchers, clinicians, patient advocates, biotech execs… to try to understand the cancer ecosystem. Just for the little anecdote, the person who most concretely led to getting things off the ground was a certain Franck Bourdeaut from the Curie Institute. I saw him on a short YouTube clip talking about rhabdoid tumors, which are another kind of SMARCB1 tumor (the SMARCB1 aspect is how I fell upon the clip). I don’t want to sound too woo woo, but I found his energy and manner very inspiring and human.
I showed the clip to Jean-Baptiste and said we needed to meet with him and tell him our story and bounce around ideas about how we could help move the needle on these deadly SMARCB1 cancers. Franck was as open and receptive as I had imagined he would be and with his colleague Olivier Delattre, whose laboratory at Curie first discovered the importance of the SMARCB1 gene as a tumor suppressor in the late 90’s, floated the idea of hosting a symposium on SMARCB1 cancers, to give specialists from all over the world a forum to exchange both formally through presentations of their current work and informally over meals and “down time”.
We loved the idea despite the fact we had never done anything like it before. Franck and Oliver suggested who to invite. They reached out to them – after all we had no legitimacy at this point other than being well-intentioned bereaved parents trying to find a way forward. We ended up hosting over three days in the south of France 30 internationally renowned experts in the SMARCB1 cancer field: oncology researchers, clinicians, scientists, biologists, immunologists, and geneticists from North America, the UK and Europe. It was a huge first step for us.
Once we had this symposium to show for ourselves, we created a website (smarcb1hope.org) and chose a couple of research projects to support. Now we had something concrete to raise funds for. It’s pretty hard to raise money if you don’t have something concrete you are trying to finance! Plus, you have to get the word out or no one will know what you are doing. We don’t bombard our contacts and donors with too many emails, but we do keep them up to date on how our efforts are evolving. A recent email for example was about our new step with the Foundation Ella Toulouse for Adolescent and Young Adult Cancers under the aegis of Fondation ARC and explained how our smaller SMARCB1 Hope association co-exists alongside it.
As a French-American family, what has it meant to you to see support from France and the U.S. unite for this cause?
It’s incredible – support for science and research cannot have borders! Cancer certainly doesn’t.
As humans, we are all in this together and must collaborate! There is fantastic research going on all over France, and it is really encouraging and heart-warming to see our American friends, family and contacts support it.
Vive la Science!
Support the Ella Toulouse Foundation for Adolescent and Young Adult Cancers, under the aegis of Fondation ARC
Cassie’s words remind us that research funding is not just about the sciences it supports. Behind every grant is a story of family, hope, and lives that, though cut too short, continue to be a powerful force for good. If her family’s journey has moved you, here is how you can help carry it forward.
The Ella Toulouse Foundation for Adolescent and Young Adult Cancers is hosted under the aegis of Fondation ARC, France’s leading independent cancer research foundation, 100% funded by philanthropic support. Each year, the foundation supports many of the most promising projects chosen through a rigorous impartial selection process by 271 volunteer scientific experts based in France and internationally.
Powered by an extensive network of experts and committed donors, Fondation ARC can fund innovative research projects with strong potential for breakthroughs, including early-stage discoveries, young researcher development and support, and cross-cutting themes for targeted groups that are often underfunded elsewhere. In 2012, Fondation ARC set a goal of contributing to cure 2 out of 3 cancers in 2025. Now, it aims to expand that number to 3 out of 4 in 2035.
As cancers affecting adolescents and young adults continue to rise and present major unmet medical and research challenges, Fondation ARC has made AYA cancers a strategic priority and launched a dedicated funding program in October 2025. By leveraging its expertise to support new research in this still little-understood category of cancers, Fondation ARC ensures the Toulouse family, and all those dedicated to this cause, can realize their vision of providing hope for other patients and families facing AYA cancers.
As a partner of Fondation ARC, Friends of Fondation de France is proud to support the Ella Toulouse Foundation for Adolescent and Young Adult Cancers in their U.S. fundraising. Gifts to Friends of Fondation de France in support of the Ella Toulouse Foundation are tax-deductible in the U.S. and contribute to advancing research for adolescent and young adult cancers, with a primary focus on solid tumors and the crucial role epigenetic mechanisms play in their development and growth.
We are deeply grateful to Cassie for sharing her family’s story, which stands as a testament to the strength of French-American friendship and the power of transatlantic philanthropy to advance research and support families affected by AYA cancers.
To learn more about the Ella Toulouse Foundation under Fondation ARC and to support their work, visit this page.
