Children's Tumor Foundation

06/10/2026

Living with NF means navigating a complex healthcare system, and knowing how to speak up for yourself makes all the difference. Join the NF Collective on June 24, 2026 from 7–8 PM EST for the next session in their NF Community Webinar Program Series: Living with a Rare Disease — "How to Advocate for Yourself."

You’ll learn how to effectively communicate, set goals, and advocate for yourself within the community and healthcare providers. This session will be led by Gina Friesl, Patient Education Manager from Alexion Pharmaceuticals, and Murray McCartan, NF Collective Vice Chair.

🔗Register now: https://bit.ly/NFcollectivewebinar

06/09/2026

We’ve launched a global initiative to create the first-ever consensus-based clinical care recommendations for NF1 and all forms of SWN. This initiative aims to curate the best available medical evidence and align clinical guidance across countries, disciplines, and care settings so that no matter where in the world you live, your care is informed by the same evidence-based recommendations.

The first phase will launch with genetic testing guidelines for NF1 and SWN, while future phases will tackle other critical areas of clinical care.

Led by a steering committee of NF specialists from the US, UK, Austria, Belgium, and Spain, this global initiative marks a critical step toward equitable, standardized care for everyone living with NF.

🔗 Read more here: https://www.ctf.org/news/global-clinical-care-consensus-recommendations-for-nf

The Children's Tumor Foundation's mission is to drive research, expand knowledge, and advance care for the NF community.

06/09/2026

If you could sit down with a top NF researcher or clinician and ask them ONE question — what would it be?

The 2026 NF Summit in Denver (July 9-11) is your chance to do exactly that.

Drop your question below 👇 You might just hear it answered at this year's Summit.

06/03/2026

What do six World Marathon Majors, $350,000 for NF research, and a mom determined to make a difference have in common?

Kristy Rath. 💪

When her daughter Jane was diagnosed with NF1 as a baby, Kristy joined the NF Endurance - Children's Tumor Foundation team looking for a way to take action. Fifteen years later, she's completed one of distance running's greatest achievements—all six World Marathon Majors—and watched Jane benefit from the very research she's spent years helping to fund, including treatment with Koselugo (selumetinib).

Now that's a finish line worth celebrating. 🏃‍♀️💙

Read her story: https://www.ctf.org/news/nfe-athlete-spotlight-kristy-rath/

06/01/2026

NF Awareness Month may be ending, but families affected by NF still need treatments, answers, and progress.

Before midnight tonight, your donation, one time or sustaining, will be matched dollar-for-dollar to keep research moving forward and bring more options to people living with NF.

Let’s finish strong.
ctf.org/donate

06/01/2026

NF Awareness Month may be over, but there’s still time to make twice the impact for the NF community.

Today only, every donation, whether one-time or monthly, will be matched dollar-for-dollar to accelerate research, drive treatments forward, and keep momentum building for people living with NF.

The match ends at midnight tonight. Visit ctf.org/donate now.

05/30/2026

Awareness takes action.

This weekend is your final opportunity to use code ACTION and receive 20% off CTF merchandise.

Stock up on your favorites, grab something new, and help keep NF visible long after May ends.

🛍️ ctf.org/store

05/29/2026

We wanted to share information about a clinical trial that may be relevant to some individuals in the NF2-related schwannomatosis (NF2-SWN) community.

Exelixis is currently enrolling patients in a Phase 2 clinical trial (STELLAR-201) evaluating zanzalintinib (XL092), an investigational oral therapy for recurrent or progressive meningioma. According to the study materials, NF2-associated meningioma is eligible for enrollment.

This study is evaluating zanzalintinib in patients with recurrent or progressive meningioma that has progressed after standard therapies.

If you or a family member has recurrent or progressive meningioma, please talk with your doctor or care team to determine whether this study could be appropriate.

Key details from the study materials include:
🔸 Phase 2, single-arm, open-label study
🔸 Enrolling patients with WHO grade 1, 2, or 3 meningioma
🔸 NF2-associated meningioma is allowed
To learn more about the trial, visit ClinicalTrials.gov and search: NCT07428616

Please note:
Zanzalintinib is an investigational therapy and is not approved by the FDA for this use. Safety and efficacy have not been established.

05/29/2026

Progress and partnership go hand in hand. This May, we’re grateful for the leadership of Colbeck Capital Management, together with the generous support of Cindy & David Metrikin. Their partnership is creating an opportunity for more people to take action and help accelerate progress for the entire NF community.

Because of their generosity, every new monthly gift of $25 or more — or any increase from an existing Sustainer — will be matched dollar for dollar until the match is met. That means each monthly commitment helps drive the research, infrastructure, and collaboration needed to deliver treatments faster. ctf.org/donate

For families like the Metrikins, this work is deeply personal. Their experience navigating NF has shown them how critical research, community, and consistent support are to building a better future. In their own words:

“We are deeply grateful to the Children’s Tumor Foundation for being such a vital source of support and guidance as our family navigates the trials and tribulations presented by NF. Their commitment to advancing research and fostering a compassionate community has made an immeasurable difference in our lives. We truly appreciate all they do to bring hope and progress to families affected by NF and related genetic conditions.”
— Cindy and David Metrikin

And as a small token of gratitude, new and increasing Sustainers will receive a CTF picnic blanket, a reminder that steady, monthly support helps carry this mission forward long after May ends.

Join them. Start a sustaining gift — or grow the one you already give — and help bring treatments closer for people living with NF. ctf.org/donate

05/28/2026

Last chance to share your NF story! Entries for the I Know a Fighter Story Contest close Sunday, May 31.

Every story submitted this month has been a powerful reminder that every NF journey is different. Your story could help someone else feel less alone, more understood, and inspired to keep going.

Share your story through 🔗ctf.org/storycontest:
📸 Photos welcome
🎥 Videos welcome