The Cristian Rivera Foundation has launched a donation matching campaign to support eight-year-old Isabella “Izzy” Cashion, diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG) on August 13, 2025.
The campaign matches contributions up to $25,000 through December 31, 2025, to cover costs including medical expenses, lodging, transportation, and daily needs as her parents pause work for her CAR-T cell therapy clinical trial.Following the heartbreaking loss of his son Cristian to D.I.P.G., John “Gungie” Rivera established the Cristian Rivera Foundation in 2009. Through innovative research funding, outreach, and direct family support, the Cristian Rivera Foundation continues its commitment to helping children and families affected by D.I.P.G. while advancing the search for a cure.
In this OncoDaily interview, John Rivera, the foundation’s founder, discusses its research funding, including support for clinical trials led by Dr. Mark Souweidane at Weill Cornell Medicine and Memorial Sloan Kettering Cancer Center. Dr. Souweidane, Vice Chair of Neurological Surgery at New York-Presbyterian/Weill Cornell.
The Cristian Rivera Foundation was born from your personal experience as a parent. Can you share what led you to create the Foundation, and what you hoped to change for other families facing D.I.P.G.?
After losing my son Cristian to D.I.P.G., his life and courage became the driving force behind everything I do today. In 2009, I founded the Cristian Rivera Foundation, a 501(c)(3), to honor his legacy and to help other families facing this devastating diagnosis.
Today, we are seeing real signs of progress. Three children have responded positively to clinical trials led by Dr. Mark Souweidane at Weill Cornell Medicine; research our foundation helps fund. Those children represent something that was almost unimaginable when Cristian was diagnosed. Their outcomes are providing promise not only to families, but to the broader medical community working to change the trajectory of D.I.P.G.
We also support critical genetic research conducted by Dr. Oren Becher at Mount Sinai’s Kravis Children’s Hospital, focused on better understanding the biology of these tumors and identifying new treatment pathways. Advancing science on multiple fronts is essential if we’re going to make meaningful progress.
Beyond funding research, our mission is also about awareness and support. We raise funds through events, newsletters, and media outreach to educate people about D.I.P.G. and its devastating impact. Just as importantly, the foundation has become a source of guidance and financial assistance for families navigating this diagnosis. We work closely with them to help provide information, support, and a sense that they are not alone in this fight.
Cristian’s journey continues to guide everything we do, and our goal remains simple: to give children and families facing D.I.P.G. more time, more options, and more hope.
When your son was diagnosed, treatment options were extremely limited. How has that early experience shaped the Foundation’s focus on both research funding and family support?
When my son Cristian was diagnosed, the treatment options were extremely limited, there were no curative therapies, and survival was measured in months. That experience fundamentally shaped the foundation’s mission from the very beginning. Losing Cristian to D.I.P.G. taught me that the medical community needed not just awareness, but resources, real, sustained funding, to push research forward so that other families wouldn’t face the same hopelessness we did.
That’s why the Cristian Rivera Foundation was built on two pillars: funding innovative research and supporting families through the journey. From our very first gift to Dr. Mark Souweidane’s lab at Weill Cornell Medicine, to record-setting donations like the $365,000 gift in January 2026, our work is about accelerating science while ensuring families don’t go through this alone. We knew early on that awareness itself was critical. D.I.P.G. is rare, so most people have never even heard of it.
That’s why we invest in education, media outreach, and community support, so no family feels isolated. My son’s experience showed me that funding research without supporting families would leave a gap. So, we strive to address both sides: science to change future outcomes, and human support for families facing this disease.
You Can Also Read: Cristian Rivera Foundation Makes the Largest Donation to Date: $365,000 Gift to Support DIPG Research at Weill Cornell Medicine
Over the years, the Foundation has invested millions into D.I.P.G. research. What progress have you seen that gives you reason to believe change is possible, even in the face of such a devastating diagnosis?
When Cristian was diagnosed, there was almost nothing to point to, no real roadmap, no pipeline. What keeps me believing that change is possible is that we’re no longer talking about D.I.P.G. as if it’s untouchable. Through the foundation, we’ve been able to direct meaningful dollars into research that’s actively trying to move the needle, supporting clinical work at Weill Cornell Medicine with Dr. Mark Souweidane and genetic research at Mount Sinai with Dr. Oren Becher.
We’ve now donated more than 4 million toward D.I.P.G. and pediatric brain tumor research, and that funding has helped keep momentum alive when traditional systems move too slowly. The progress isn’t abstract; it shows up as real trials, real science, and real kids getting options their families wouldn’t have had years ago.
One of the most important aspects of that progress has been clinical trials. Why are trials so critical for children with D.I.P.G.?
D.I.P.G. families don’t have the luxury of waiting for ‘someday.’ Clinical trials are where hope becomes tangible, where a family can access a real treatment pathway instead of being told there’s nothing left to try. Since the launch of Dr. Mark Souweidane’s clinical trial for D.I.P.G. at Memorial Sloan Kettering Cancer Center in May 2012, the field has made significant strides in advancing both scientific understanding and potential treatment approaches for this devastating disease.
Clinical trials also create the learning loop we desperately need: every child who participates helps doctors understand what works, what doesn’t, dosing, delivery, and what should come next. Without trials, progress stays stuck in theory. With trials, science has a chance to become survival.
That research directly connects to families like Isabella “Izzy” Cashion’s. How did the Foundation become involved in supporting Izzy and her journey?
When we meet a family like Izzy’s, it’s impossible not to see Cristian in them, same shock, same fear, same fight. Our Foundation exists to support families facing D.I.P.G., not just by funding research, but by stepping in when the burden becomes overwhelming. Izzy’s journey is exactly why we do what we do: families suddenly dealing with hospitals, specialists, and trial logistics, while trying to hold their lives together. We got involved because no family should feel alone in this.
Izzy has been approved for a CAR-T cell therapy clinical trial, which is rare for D.I.P.G. patients. What makes this opportunity so significant, and what does it represent for the future of treatment?
Any time a D.I.P.G. child can access an advanced trial option, it matters because it signals that the field is evolving beyond the limited choices families used to face. What’s significant about newer immunotherapy approaches is that they represent a shift in how researchers are trying to fight this disease: not just managing symptoms but going after the tumor in more targeted ways. In the future, it represents momentum, greater innovation, more precision, and more urgency. And for families, it represents something they’re rarely given in D.I.P.G.: a real shot.
Accessing trials often comes with enormous financial and emotional costs. Can you describe the challenges families face when pursuing experimental treatment far from home?
Families are hit from every direction at once. You’re dealing with a devastating diagnosis, and then you’re being asked to travel, coordinate care, manage waiting lists, and stay near major hospitals for long stretches of time. Izzy’s story makes that reality clear: long inpatient stays, intense care needs, and the costs that come with it, housing, travel, meals, time away from work, and trying to keep your family functioning. The emotional toll is just as heavy because every day is high-stakes and uncertain.
To help ease that burden, the Foundation launched a matching-donation campaign for Izzy. How does this campaign work, and why was it important for the Foundation to step in at this moment?
We launched the match because families in this position shouldn’t have to carry the financial weight alone. The campaign is straightforward: we committed to matching donations, up to a set amount, to help accelerate what the family can raise and reduce the pressure as they pursue care and treatment. In Izzy’s case, we committed to match donations up to $25,000 because timing matters and because community support can be the difference between a family being able to say ‘yes’ to an option or having to walk away from it.
Beyond Izzy’s case, her story highlights larger systemic issues. What do you want the public and policymakers to understand about the urgent need for funding and access in rare pediatric cancers like D.I.P.G.?
I want people to understand that pediatric brain tumors like D.I.P.G. don’t get the attention or the resources commensurate with the devastation they cause. Families are forced into a race against time, and access to trials and specialty care often depends on geography, money, and connections. That isn’t acceptable. If we’re serious about saving children, we have to treat pediatric brain tumor research like the emergency it is, fund it consistently, support clinical infrastructure, and make sure families can access care without being financially destroyed.
Looking ahead, as both a founder and a parent, what keeps you hopeful, and what message would you share with families who are just beginning this unimaginable journey?
What keeps me hopeful is that the fight is no longer isolated. There are researchers pushing forward, families refusing to give up, and communities stepping up. I also hold onto the fact that our foundation exists for a reason: to fund research, to support families, and to keep pressure on the system so D.I.P.G. doesn’t stay invisible.
To any family just starting this: you are not alone. Ask questions, demand options, lean on the people who offer real support, and know there is a community behind you, because we’ve lived this, and we’ll walk with you through it.
By Lena Mkrtchyan, MD, Editor at OncoDaily