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NF Walk - Children's Tumor Foundation

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NF Walk - Children's Tumor Foundation

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NF Walk brings the community together to raise awareness, support families, and move us closer to ending NF.

The Children’s Tumor Foundation’s Walk Program was established in 2009 as an important national fundraising program to support NF research, raise awareness, and provide support for individuals with NF and their families. Over the last ten years it has raised more than $10 million. In 2019, the campaign was branded Shine a Light NF Walk, CTF’s signature fundraising event, to bring NF out of the shadows and inspire the community to come together to raise critical funds for NF research. If you have any questions, please visit shinealightwalk.org or contact us at [email protected].

10/14/2026

Happy ! 💙💚

Today, we’re highlighting 9 year old NF1 Hero Elizabeth and her mom, Jennifer, from Womack Warriors at NF Walk New Jersey!

Elizabeth was diagnosed with NF1 at age 5 after her doctor noticed multiple café au lait spots and a larger head size, along with concerns about her speech development and coordination. Like many parents, Jennifer initially faced the fear and uncertainty that come with a diagnosis. She began researching NF, talking with Elizabeth’s doctors, and looking for ways to get involved. Through her medical team and the New Jersey NF community, she found the Children’s Tumor Foundation and the NF Walk!

For Jennifer, participating in the Walk is about fighting for a cause that affects her family, supporting research, raising awareness, and helping create better outcomes for those living with NF. Most importantly, she walks to show Elizabeth that she will always be there for her and to teach her children the importance of giving back.

Over time, Jennifer has grown from a worried parent navigating the unknown into a fierce advocate for her daughter at school and in the community. While she still worries about how Elizabeth navigates relationships with her peers, she knows she can help her face whatever challenges come her way.

Each year, Jennifer looks forward to the welcoming NF community and seeing her children’s faces light up as they enjoy all the activities the Walk has to offer. For the Womack Warriors, it’s about finding connection, fighting for a brighter future, and celebrating exactly who Elizabeth is.

💙 “The NF Walk is important because it shows my child to always ‘be uniquely you.’”

Thank you, Jennifer and the Womack Warriors, for showing us what it means to turn uncertainty into advocacy, love into action, and every step into hope. We’re so grateful to have you in the NF Walk community! 💙

09/30/2026

You know what day it is, ! 💙 💚

Today, we’re highlighting Katie Pettee, a 23 year old NF1 Hero participating in the NF Walk Atlanta!

Katie first began experiencing noticeable symptoms of NF at 17. After an abnormal MRI, a neurologist told her that it appeared she had NF1, but she was never given an official diagnosis or much information about the condition. For years, Katie navigated confusing symptoms without fully understanding what was happening with her body.

Five years later, Katie found a new neurologist who officially diagnosed her with NF1 and provided more information. But it was finding the Children’s Tumor Foundation that truly gave Katie the clarity and understanding she had been searching for. Through CTF, she discovered resources, learned more about her condition, and found comfort in knowing there is a community of people who understand the NF journey.

For Katie, participating in the NF Walk is about breaking through the isolation that can come with NF and connecting with others who have shared experiences. She is especially excited to meet other people living with NF and raise awareness together!

As an EMT, teacher, and aerialist, Katie says NF can impact her life every day and sometimes make the things she loves more difficult. But she refuses to let it stop her.

💙 “Never quit doing what you love just because something is trying to bring you down. Show it that you’re stronger.”

Katie’s story is a reminder that finding your community can make all the difference, and that no one should have to navigate NF alone.

Thank you, Katie, for sharing your story and bringing your strength, determination, and faith to the NF Walk community. We can’t wait to see you at the NF Walk Atlanta this weekend! 💙

09/23/2026

We are back with another , where we celebrate the incredible NF Heroes and the people who continue to carry their stories forward. 💙

Today, we’re highlighting Team Amie from NF Walk Northeast Ohio, led by Ron Petras in honor of his daughter, Amie.

Amie was diagnosed with NF2 related schwannomatosis in 1997 at just 17 years old after experiencing lightheadedness that led doctors to discover a spot on her brain. For nearly 30 years, NF became a major part of Ron and Amie’s lives. They got involved with Children’s Tumor Foundation through the Cleveland Clinic.

Over the years, Ron and Amie participated in countless CTF events, including NF Endurance, NF Walk, Cupid’s Undie Run, NF2 Gatherings, the NF Summit, Cleveland Got Sole, and more. Ron continues to show up for the NF community, photographing events and gifting those photos to participants as his way of giving back to the people who have supported the cause.

For Ron, the Walk is also about staying connected to the NF community and the parents and families who understand this journey.

Amie passed away on May 30, 2025, but her strength, courage, and smile continue to inspire Ron and everyone who knew her.

💚💙 “She never lost her smile. She never gave up.”

Ron knows the pain of losing a child, but he continues to walk and give back in the hope that another family won’t have to experience that loss.

“NF Warriors never give up.” 💙💪

Thank you, Ron, for sharing Amie’s story and for nearly three decades of showing up for the NF community. We are honored to walk alongside you and Team Amie.

09/16/2026

Welcome back to ! 💙 Today we’re highlighting 4 year old NF1 Hero, Jack, and his dad, Billy, from Team Jack Attack - NF Walk Northern Virginia!

Diagnosed with NF1 in 2025 at age 3 after a series of pediatric appointments prompted by his café au lait spots. A family friend living with NF1 also recognized the spots and advocated for Jack to get checked.
Soon after his diagnosis, Jack’s family participated in the NF Walk Richmond. Feeling helpless about Jack’s diagnosis, they found a way forward by channeling that energy into fundraising, research, and awareness. That first Walk inspired Billy, his family, and a friend to bring the Walk to Northern Virginia in 2026!

For Billy, the Walk is about choosing action over helplessness. Since Jack’s diagnosis, he has experienced everything from fear and anger to uncertainty about what the future may hold. But those feelings didn’t serve Jack or the future his family wants for him. What does help is optimism and doing everything they can to support research toward better therapies and a cure.

💙 “That’s why we walk. Because every dollar we raise is a dollar closer to a better future for Jack and others with NF1.”

Jack is still very young and early in his NF1 journey, and the unknown is the hardest part for his family. For now, they are grateful for the present. Jack is symptom-free and enjoying life like any 4 year old should, while his family fights for a better future for the NF community.

💙 “Hope is being able to see that there is light despite all of the darkness.” — Desmond Tutu

Let’s show some love for Jack Attack as they walk for Jack, for research, and for every person living with NF

09/15/2026

Three Walks. Twice the impact.

Starting today, September 15, NFX will match donations to the Michigan, Northeast Ohio, and Cincinnati NF Walks!

As a sponsor of all three Walks, NFX is helping every gift go twice as far to accelerate research and improve the lives of people living with NF.

The impact will extend far beyond Walk day, fueling continued progress toward better treatments and care.

Choose your Walk and make your gift at nfwalk.org.

We’re proud to come together across three Walk communities to accelerate progress for everyone living with NF.

All donations up to $250 will be matched until the $2,500 matching fund has been fully used in each city.

09/09/2026

Happy 💙💚

Today we’re highlighting 4 year old Theo, the NF1 Hero behind Theo’s Troopers from NF Walk Boston!

After his diagnosis in June 2022, Theo’s mom, Angela, wanted to get involved with the NF community. In 2024, she traveled to New York to participate in the NF Walk when there wasn’t a Boston Walk. When the Boston Walk returned in 2025, Angela became the volunteer Walk Director!

Angela is excited to walk again this year to connect with the NF community, raise awareness, and support research toward better treatments and a cure. As parents, NF has taught them to appreciate the little moments and not take anything for granted. Angela says, “There are times when the uncertainty can be difficult, but Theo’s strength and resilience inspire us every day.” The NF Walk has connected Theo’s Troopers with an incredible community of families who understand their journey and remind them that we’re not alone.

💙 “Theo inspires every step we take. Today for him, tomorrow for every child living with NF.”

Thank you, Angela, for sharing your story and for all you do for the NF community. Let’s show some love for Theo’s Troopers and keep walking, raising awareness, and moving forward together for every family impacted by NF! 🙌

09/02/2026

💙 Why do YOU walk?

Every NF story is different, but each one has the power to inspire, connect, and remind our community why we keep moving forward.

That’s why we’re asking YOU to share your story for a chance to be featured in our spotlight series!

Tell us about your NF Hero, your journey, your team, and what the NF Walk means to you and your family. Whether you’re walking in honor of someone you love, living with NF yourself, supporting a friend, or showing up for the NF community, we want to hear your story!

👉 Share your story at go.ctf.org/whyiwalk or click the link in our bio.

04/21/2026

National Volunteer Week has us feeling extra grateful for the incredible volunteers who show up and give their time so generously.

From early morning setup to cheering on every step, your energy and heart make the magic happen at the NF Walk. Because of you, families affected by NF come together, communities take action, and critical funds are raised to drive the research that leads to new treatments.

Thank you for every hour, every smile, and every moment you give to help move this mission forward. We appreciate you more than words can say! 💙💚

Address

697 Third Avenue, Suite 418
New York, NY
10017

Opening Hours

Monday	9am - 5pm
Tuesday	9am - 5pm
Wednesday	9am - 5pm
Thursday	9am - 5pm
Friday	9am - 5pm

Telephone

+12123446633

Website

http://shinealightwalk.org/, https://ctf.canto.com/v/SALW2025/landing?viewIndex=0

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