NV-RDAC Member Profile: Brigette Cole July 2026 | Member-by-Member Series
Brigette Cole was diagnosed just before her 28th birthday. It was almost 20 years ago in Reno, and a breast cancer diagnosis in a woman that young was rare enough that most people around her had never seen it. She was uninsured. She did interviews with Renown Health and connected with Access to Healthcare because she had nowhere else to turn.
And through all of it, she kept asking the same question: Is there anyone else like me? Someone my age, in a similar situation, who I could just talk to?
The answer was always no.
Brigette survived that first diagnosis, and a second one at 37. She could have walked away from cancer entirely. Instead, she built a career out of making sure the answer to that question is never “no” again. Today she is the CEO of the Northern Nevada Children’s Cancer Foundation (NNCCF) and a member of the Nevada Rare Disease Advisory Council, where she brings something the council needs: the perspective of someone who has lived the isolation, navigated a system that was not built for rare, and spent more than 15 years building the support she once went without.
“My personal experience with breast cancer is the reason I am here today, doing what I do,” Brigette explains. “It gave me a passion for making sure others don’t face this alone and that they feel supported. I am constantly dreaming of better ways to help the families we serve and ease their burden.”
Is Childhood Cancer a Rare Disease?
Yes. While cancer as a whole is common, childhood cancer is not, and most individual pediatric cancers meet the federal definition of a rare disease. Roughly 15,000 children and adolescents are diagnosed with cancer in the United States each year, and those cases are spread across dozens of distinct diagnoses, many so uncommon that a family may never meet another child with the same one.
That rarity carries a specific kind of weight. When a disease is rare, families often face it without a roadmap, without a nearby community of people who understand, and without systems designed around their needs. It is the same isolation Brigette recalls from her own diagnosis, and it is the through line that connects childhood cancer to the broader rare disease experience.
There is another connection, too. A childhood cancer diagnosis is never just about the child. As Brigette puts it, “It is a family diagnosis.” Siblings, parents, and caregivers can carry anxiety, depression, and trauma long after treatment begins or ends. That whole-family, whole-person reality is exactly what NV-RDAC works to address across every rare and complex condition in the state.
The Survivor Who Built What She Needed
Brigette joined NNCCF as Director of Programs and Services, and one of her earliest memories on the job still shapes how she leads.
A young girl the foundation was serving had just been placed on hospice. In about a week, Brigette and her team pooled funds and pulled together a memory-making trip to Hawaii, revealed through a scavenger hunt in the office. The family found a beach bag, sandals, a beach ball, and finally the surprise. She can still picture them in the office wearing leis, laughing, tossing that beach ball around, one joyful afternoon in the middle of something impossibly hard.
That instinct, to find the pressure a family is carrying and lift some of it, became the blueprint for how she grew the organization.
“Childhood cancer turns an entire family’s world upside down, but the bills, responsibilities, and everyday needs do not stop. That is where NNCCF steps in. We help relieve some of that pressure so families can focus on their child, their time together, and the moments that matter most. Being able to be part of that is truly amazing, and I cannot imagine doing anything else with my life.”
— Brigette Cole, CEO of Northern Nevada Children’s Cancer Foundation
Since stepping into leadership, she has expanded NNCCF’s programs well beyond financial assistance:
- Family Navigation, so no family has to figure out the system on their own
- The Golden Guide, a navigation binder that puts answers and resources in one place
- The Comfort Wagon, stocked with necessities for hospital stays
- No-cost mental health support for the entire family
For 26 years, NNCCF has walked alongside families across the region, from Reno and Sparks to rural communities, providing nearly $12 million in direct financial assistance so parents can focus on what matters most: their child.
NNCCF’s Impact on Childhood Cancer in Nevada: By the Numbers
~15,000 | Children and adolescents diagnosed with cancer in the U.S. each year |
100% | All individual childhood cancers meet the federal rare disease threshold |
26 | Years NNCCF has supported northern Nevada families |
~$12M | In direct financial assistance provided to families |
$4M+ | Raised for childhood cancer research through NNCCF’s Shave for the Brave |
~$1.3M | In scholarships awarded to patients and survivors through NNCCF’s Inspire Scholarship Program |
76k | square miles of Nevada served through NNCCF’s programs and services |
0–25 | Ages of children and young adults served by NNCCF, from diagnosis through survivorship |
What Does a Family Actually Need After a Childhood Cancer Diagnosis?
Brigette’s answer is grounded in what she sees every day: families are never just done.
“I had to pave my own way and find my own meaning behind the ‘why me’ which I think is something everyone goes through,” Brigette shares. “I would say to someone going through this now: no matter how rare it is, and no matter how isolated you feel from your peers or even your family, there are others who have been through it. I would suggest researching resources, and I always recommend connecting with a nurse navigator or social worker, asking all your questions, and advocating for yourself. Remember: no one is alike, no two cancers are alike, and you are not alone.”
A childhood cancer diagnosis does not end when treatment ends. Many children face long-term side effects, lasting mental health needs, and the challenges of survivorship for years. Siblings and parents carry their own weight. The bills, the responsibilities, and the everyday needs do not stop.
That is why she believes so strongly in whole-body, family-centered care that treats a diagnosis as a life changed, not a chapter closed. It is also why she keeps returning to one conviction: continuity matters. Families need support at diagnosis, through treatment, into survivorship, and beyond, with stronger collaboration among the hospitals, specialists, schools, and organizations in their lives.
What Is NV-RDAC Doing for Nevada Families?
Brigette’s perspective informs the council’s work on the priorities that matter most to families like the ones she serves:
Strengthening whole-family, whole-person support. The council’s work recognizes that a rare or serious diagnosis affects an entire household. NV-RDAC is advocating for care models that account for mental health, survivorship, and the long tail of needs that follow a diagnosis.
Improving care coordination across specialties. For families juggling multiple providers, fragmented care adds burden and risk. The council is working to connect the specialists, schools, and support organizations in a family’s life into a more coordinated whole.
Keeping families supported close to home. More than half of rare disease families in Nevada report traveling out of state for care. The council’s strategic priorities are built around expanding in-state capacity so families spend less time in crisis and more time together.
Elevating patient and family voices in policy. NV-RDAC’s Needs Assessment gathers the lived experience of Nevadans directly, turning individual stories into the data that shapes legislative recommendations, the ripple Brigette describes made statewide.
“Brigette leads with lived experience and real compassion, and she never loses sight of the family behind the diagnosis. Having her at this table makes our work more honest and more human. Every Nevada family facing a rare or serious diagnosis is better off because Brigette refuses to let anyone walk this journey alone.”
— Annette Logan-Parker, Chair, Nevada Rare Disease Advisory Council
About Brigette Cole
Brigette Cole is the CEO of the Northern Nevada Children’s Cancer Foundation (NNCCF) in Reno, Nevada, the region’s only nonprofit dedicated solely to childhood cancer. A two-time breast cancer survivor first diagnosed just before her 28th birthday, she has spent more than 15 years in patient advocacy, cancer navigation, and nonprofit leadership.
She joined NNCCF as Director of Programs and Services and now leads the organization, where she has launched Family Navigation, the Golden Guide navigation binder, the Comfort Wagon, no-cost mental health support for entire families, and more. Brigette serves on the Nevada Rare Disease Advisory Council and lives in the Reno area with her husband and son.
The Nevada Rare Disease Advisory Council was established by the Nevada Legislature in 2019 (SB 315) to improve awareness, diagnosis, treatment, and support for Nevadans living with rare diseases. Learn more at nvrdac.org.
Childhood cancer changes a whole family’s world. If your family has been affected by a childhood cancer or a rare diagnosis, visit our website to find resources, connect with the council, or share your story. To learn more about support for northern Nevada families, visit the Northern Nevada Children’s Cancer Foundation.