A "Safety Net" for Your cancer journey - guided, simplified & personalized

children running on the beach with the text "your purchase matters" over the image

"The psychological benefits of this program to families cannot be understated. The ability to say, 'we are looking at everything' and 'we are not alone' was never achievable, until Layla made it so."

Some call it patient advocacy, some call it patient navigation. We go far beyond both with Cancer Beacons. A beacon is a guide and we are strong believers in a personal, guided, patient experience for all cancer patients, adult and pediatric. Bottom line is we'll help you play chess, in a checkers world.

Our healthcare systems have eroded to the point where communication and innovation are not only severely restricted, they are almost discouraged, resulting in a missing but much needed new layer of support. We fill that void by working with you and your team to ensure that "nothing is left on the table."

What we can help with is:

  • Second opinion coordination
  • What questions to be asking your team
  • Accessing functional precision (personalized) medicine (live tissue drug screening)
  • Peer-reviewed paper searches to share with your provider
  • Off-label use / drug repurposing insurance approvals
  • Understanding and navigating off-label use state law hurdles
  • Clinical trial search, anecdotal results from PI's, selection
  • Assist with securing financial support from foundations / crowdfunding
  • 1-on-1 conversations between us and your team lead
  • Ongoing communication with your entire medical team
  • Medical tech talk translation / interpretation
  • Virtually attending meetings with your team, even clinic visits
  • Impassioned compassionate use pleas to drug manufacturers
  • Assistance with CVS Specialty setup and ongoing navigation
  • And so much more

Our patient portal ensures that all virtual meetings, patient information, patient notes, and billing are all secure, in compliance with HIPPA requirements.

responses to functional precision medicine

EVIDENCE THAT PERSONALIZING THE JOURNEY IS THE WAY FORWARD

our world-first approach

We aim to work alongside you as well as to integrate with your team so that we can provide seamless end-to-end support. Answers for some of the toughest cases may reside in the wild west which can be too time consuming for medical teams, difficult for patients to comprehend, and tricky to get timely insurance approval for, or approved at all. Avoiding treatment delay is a critical component to cancer care and we have a secret sauce.

Our results speak for themselves as we have facilitated many "better than would have been" outcomes for patients, highlighted by one patient given two weeks to live with the case declared "inoperable" in early 2023. We quickly stepped in, coordinated a 2nd opinion by the best-in-class team, all in less than 24-hours. The result was the patient quickly relocated temporarily to receive a gross total resection, and is still alive today with no evidence of disease. Another example is we helped a family identify that their loved one's cancer was likely highly chemotherapy resistant, meaning any chemotherapy likely would not work. They then looked to other options such as immunotherapy while focusing heavily on quality of life. That was over two years ago and the patient is doing well. These are just two of many examples.

We are led by our co-founder who is a member of the Medulloblastoma Working Group, the Ependymoma Working Group, the Society for Functional Precision Medicine and, because of this line of specialized work, is also a Special Guest Lecturer at Harvard Medical School.

The story of how this all came to be, can be seen here in a story done by Fox.

Special note, we do not and are not allowed to, by law, give medical advice. We instead aim to help ensure you do get the best advice possible from the best medical professionals out there.

why we do, what we do

TESTIMONIALS

"...we were told there were no options left, that’s when Shawn truly stepped in."

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"Our local team told us our child had two weeks to live because of an "inoperable" 4th recurrence. Knowing otherwise, Shawn took control and got us to Boston because not only was it operable, they got the whole tumor out. Our child is thriving, 3-years later."

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"It truly feels like Shawn is walking this road alongside you."

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"It feels serendipitous, because the services it looks like you offer are exactly what we feel are the missing pieces in our care team."

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"...we discovered a glaring gap in available support: many nonprofits focus on helping families with living expenses like rent or utilities but will not cover medical costs, while others focus solely on research and are hesitant to support a single patient when their priority is long-term data."

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"Science and technology are moving faster than the trials that underpin standard of care..."

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"Shawn has helped move the science forward while giving families something just as critical: hope."

NATALIE

My 8-year-old daughter Natalie is in active treatment for relapsed ependymoma. All standard treatment options have been exhausted, and we are five years and five tumor resections into this journey. I’ve seen firsthand how complex and overwhelming this path can be, and I want to share why there’s such a critical need for something like Cancer Beacons.

Shawn is a fellow pediatric brain cancer parent who turned the loss of his beautiful daughter, Layla, into a commitment to helping other families facing this disease. Through Cancer Beacons, he does the time-consuming, behind-the-scenes work that most parents in crisis wouldn’t even know how to start. He reaches out to researchers, physicians, and specialists across the pediatric brain tumor field, helping families gain direction, access to knowledge, and connections that can inform care. It truly feels like Shawn is walking this road alongside you. His support for families is personal, shaped by the experiences he and Layla lived through.

Shawn has made a meaningful difference in Natalie’s care. He helped connect us with her current neurosurgeon at Boston Children’s Hospital and supported the coordination that led to precision drug screening on her tumor tissue on two separate occasions. That process requires knowing who to contact, how to navigate complex logistics, and how to keep things moving forward when we already have so much on our plate. Along the way, we discovered a glaring gap in available support: many nonprofits focus on helping families with living expenses like rent or utilities but will not cover medical costs, while others focus solely on research and are hesitant to support a single patient when their priority is long-term data. Insurance currently won’t cover this type of testing either. Shawn helped us work through these barriers, finding resources and support that otherwise would not have been accessible.

This made it clear just how urgent the need is for Cancer Beacons, a program that helps families who are actively making decisions about their child’s care access real treatment options as quickly as possible. It connects patients with possibilities that can actually inform treatment in real time, giving families the guidance they so desperately need when every decision carries enormous weight and time matters most.

I share our experience in the hope that it helps show how Cancer Beacons can be a steady guiding presence for families navigating this journey.

With gratitude and hope,

Sarah

Juliette

Standard of care is failing kids with recurrent brain tumors.

I'm the father of a five-year-old girl who has been fighting PFA ependymoma for more than two years. I was lucky enough to meet Shawn during the year of stability we experienced following the standard of care for newly diagnosed ependymoma, which is resection and radiation. During that time I was dissatisfied with the conversations I was having with my oncologist regarding potential recurrence; the feedback I consistently received was along the lines of "we'll cross that bridge if we come to it" and "standard of care is resection and re-irradiation."

To be clear, my dissatisfaction is not personal. Any good oncologist would say what my oncologist said since oncologists can only recommend standard of care. In the context of recurrent ependymoma the "standard of care" is determined by lack of other options rather than an approach that has demonstrated effectiveness. I only learned this through my conversations with Shawn, and I subsequently learned that if I took the initiative to research and make suggestions to my oncologist then we could have much richer conversations.

Shawn provided me with structure to determine my family's risk tolerances and shared some scientific literature related to my daughter's condition that I was able to bring to my oncologist in order to discuss treatment options outside of standard of care. This has proven to be critical in the context of re-irradiation, since this treatment modality can carry significant side effects. Thanks to Shawn we have been able to delay re-irradiation by at least a year, reducing the risk of side effects from the treatment if we do decide to pursue it. Shawn has established both a deep understanding of medical operations and a robust network of experts. These were invaluable when we decided we wanted to pursue a precision drug screen instead of re-irradiation when my daughter experienced tumor recurrence. He knew exactly who to contact and what to say. I can confidently say we would have never been able to do this without Shawn.

Cancer Beacons provides something I haven't seen from any other organization: support and ideation for cancer families while they are in the process of making critical treatment decisions. Most organizations focus on the science that patients today will not benefit from or they focus on the logistics that come after a treatment decision. Science and technology are moving faster than the trials that underpin standard of care, and families deserve to make an educated decision to pursue a novel treatment if they think it will give their child a better outcome or better quality of life.

-Jimmy

August

My son August is forever 6½.

He was first diagnosed with anaplastic ependymoma at just 5½ months old. Over the years, he faced multiple recurrences and a long, difficult road of treatments. After his first recurrence, we were introduced to Shawn through an ependymoma parent community — at that point, we were still pursuing the standard of care.

But when the cancer came back in a metastatic location, and we were told there were no options left, that’s when Shawn truly stepped in.

He showed up not just as an advocate, but as a fellow parent who understood the emotional weight of impossible choices. He brought empathy, clarity, and direction when we were overwhelmed. Through his network, Shawn connected us with a world-class pediatric neurosurgeon who reviewed August’s case and ultimately took him to surgery. That surgery gave us something we didn’t expect: clear margins, but more importantly, more time. And the time we received is a gift I’ll always carry with me.

Shawn’s support didn’t stop there. He helped coordinate the complex process of getting August’s tumor tissue to a research team in Seattle for in vivo drug screening. While it didn’t lead to a breakthrough treatment for August, it revealed something bigger: kids with rare cancers like his are often overlooked by researchers, funders, and policymakers. That reality now fuels my professional advocacy in this space.

August passed away in June 2025. Even in our grief, I see the legacy he left, and the way Shawn helped carry it forward with compassion, urgency, and vision.

Shawn is a systems thinker with a human heart. I truly believe his work will reshape the future of ependymoma and other types of brain cancer research. We are deeply grateful he walked alongside our family.

-With enduring gratitude, Erica Olenski, BCPA, CPXP

Layla: Our Co-Founder

Part 1 - Shawn has been an extraordinary force in the ependymoma community as well as the brain cancer community as a whole. At a time when so many parents feel overwhelmed, isolated, and terrified about their child’s future, Shawn shows up with knowledge, determination, and an unwavering belief that science can—and must—do better for our kids.

Through his relentless push for research, collaboration, and innovation, Shawn has helped move the science forward while giving families something just as critical: hope. Hope that progress is possible. Hope that our children’s lives matter deeply to the scientific community. Hope that the future can look different than the past.

For so many of us, Shawn represents a bridge between fear and possibility. His work has empowered parents to ask better questions, advocate harder, and believe that breakthroughs are within reach. The impact he’s made goes far beyond data or studies—it lives in the hearts of families who now feel seen, supported, and hopeful because of him, and most of all, his beloved Layla. In her memory.