Communities Taking Action

How advocates like Sarah Powlison and communities nationwide are driving progress for NF

For Sarah Powlison, advocacy is deeply personal. It is also something much larger than herself.

Sarah was diagnosed with NF1 at birth, after doctors discovered tumors growing from her mouth. Over time, she has continued to navigate a condition that can be unpredictable and often painful, with tumors affecting her body in ways that require ongoing care and resilience.

But her life is not defined by her diagnosis alone. It has shaped how she shows up in the world. For herself. And for others.

"Fighting for and bringing awareness to this cause is my way of loving my neighbors," she says.

That belief has guided her to become a steady and visible voice within the NF community.

From Personal Experience to Public Voice

Sarah understands how complex NF can be.

Even within the same family, the condition can look completely different from one person to the next. That variability can make it difficult to explain and, at times, isolating to live with. For many years, awareness and care did not keep pace with the needs of patients, especially adults managing long-term symptoms, pain, and uncertainty.

Those gaps are part of what drive her advocacy today.

She has stepped into spaces where patient voices are shaping the future. She has participated in advocacy efforts in Washington, D.C., helping ensure that NF is represented in federal funding conversations. She has worked alongside multiple NF organizations, recognizing that progress depends on a unified and collaborative effort across the entire community.

Her voice has also been recognized in meaningful ways. She has served as a panelist in patient-focused medical discussions and has received honors that reflect her impact as an advocate. Still, for Sarah, recognition is not the goal.

Impact is.

Turning Awareness Into Action

2025 Shine a Light Walk Cleveland

This year, Sarah is participating in the NF Walk, joining thousands of individuals and families who are taking action for NF. The Walk is one part of a much larger movement.

Throughout May's NF Awareness Month, communities around the world are stepping forward in visible ways.

• Landmarks are lighting up in blue and green.
• Proclamations are being issued at local and state levels.
• Billboards are bringing NF into public view.
• Neighbors, families, and advocates are finding their own ways to make NF visible in their communities.

Moments like these reflect something powerful. People are paying attention. They are choosing to act.

Action that Drives Progress

This kind of action does more than raise awareness. It helps drive real progress.

Detroit BeNeFit

It strengthens the work of the Children's Tumor Foundation, which serves as a catalyst for advancing treatments and improving care for people living with NF. That progress is already visible:

• Research supported by CTF has helped lead to two approved treatments for NF1, giving patients options that did not exist just a few years ago.
• Brigatinib, a drug identified and repositioned by CTF for NF2-SWN, is now included in the National Comprehensive Cancer Network Guidelines-meaning it is recognized by leading cancer experts as a recommended treatment option.
• Efforts are underway to develop a blood test that could detect when benign tumors transform into aggressive cancers such as MPNST, allowing for earlier intervention.
• The NF Clinic Network has grown to include approximately 80 specialized clinics, expanding access to expert care.
• Dozens of research studies are moving forward, with 78 active investigations focused on understanding NF and identifying new therapeutic approaches.

This is how progress happens. It is built over time through research, collaboration, and sustained support.

A Community that Shows Up

2025 NF Summit

Sarah has been part of that effort at every level. She has participated in events like Cupid's Undie Run, engaged at the NF Summit, and worked alongside partners across the NF community to strengthen a shared voice.

For her, advocacy is not a single moment. It is ongoing.

2025 Shine a Light Walk Cleveland

NF affects millions of people worldwide. While there is still no cure, meaningful progress is underway. That progress is being driven by individuals who continue to show up and take action.

"Will you walk with me and show love to this beautiful NF neighborhood?" she asks.It is an invitation. It is also a reminder that no one has to face NF alone.

From Awareness to Impact

The progress happening in NF today is not happening by chance. It is being powered by people.

By those who advocate in Washington, organize in their communities, share their stories, and support research funding.

Awareness leads to action. Action drives progress. And progress changes what is possible.

For Sarah, that is what advocacy is all about.

Not just raising awareness, but helping build a future where everyone living with NF has better options, stronger support, and real hope grounded in progress.

Taking action makes this progress possible.

Right now, your new monthly gift will be matched dollar-for-dollar, doubling your impact as we work together to accelerate treatments and improve outcomes for everyone living with NF.