Shine a Light NF Walk -Children's Tumor Foundation

Welcome back to ! Iowa is kicking the season off this weekend so, let’s feature NF Hero Travis from Team Kahrig. Travis is 49 and was diagnosed with NF1 early on in his life because of his Cherry birth mark and Cafe-Au-Lait spots. Travis and his wife Karen participate in walk to help promote awareness. They love interacting with others and sharing stories on their journey. When asked how NF impacts their life Karen states, “It makes us stronger in our marriage that we can travel this journey together with faith, strength, hope and love. We are all fighters, fighting for the same outcome. “END NF” Travis is my hero and he is a fighter.” Thank you Team Kahrig for sharing! 💙💚

It’s not too late to register for a walk near you at http://www.shinealightwalk.org

CONGRATS TO THE WINNERS: CHICAGOLAND WITH 95 REGISTRATIONS! 🥳

In just one week, you recruited 420 more people who will help us Shine a Light on NF 💙💚

If you haven’t registered yet, go to www.shinealightwalk.org!

🎉REGISTRATION CONTEST UPDATE🎉

So far 277 people have registered for Shine a Light Walk! Currently Philly is in the lead with 68 registrations. Chicagoland is right behind them with 64! The contest ends at midnight tomorrow 8/8 (Thursday night) so there’s still time for your city to win! Make sure you and everyone you know gets registered so you can win an ENDNF Piñata for your Walk👏

It’s time for Shine a Light Walk’s Nationwide Registration Contest!! The city that has the most participants sign up between 8/2 - 8/8 wins. The walk winner will receive a customized ENDNF piñata filled with goodies! Help your city win by registering and getting EVERYONE you know to register at http://shinealightwalk.org

Kristin is rocking her walk gear all the way in Alaska! Show us how you by sending in pics of you repping your walk getup to [email protected]

Happy ! Today we are highlighting Team Meagan, NF Hero: Meagan Ubal from Tennessee. She is now 23 and was diagnosed with NF1 at 2 months old when they found Café au lait spots. Meagan participates in walk because she thought it would be nice to raise money and share awareness throughout the world. She looks forward to meeting new people who understand what she’s going through. Meagan leaves us with this quote, “Every case of Neurofibromatosis is as unique as the person who has it. I will always keep going always!!!” We are so excited to see Meagan and everyone else at walk this year! Don’t forget to register at http://shinealightwalk.org

Welcome back to ! Today’s shining light is on Angela Chun-Soyer and her son Theo from New York. Theo is 2.5 years old and was diagnosed with NF1 on June 8th, 2022. Angela states, “NF impacts my life because it has to reshape my priorities, teaching me to cherish every moment and celebrate even the smallest victories.” This will be the family’s first walk in October, Angela is excited to be part of the community and advocate for her son. When asked why walk is important she quotes, “The Walk is important to us because it’s not just a walk; it’s a symbol of hope, unity and resilience. It’s a testament to our commitment to raise awareness, support one another, and ultimately, strive for a brighter future free from the challenges of neurofibromatosis. Together, we walk to shine a light on NF and pave the way for a world where our loved ones can thrive without the burden of this disorder.” We are so happy Angela and her family are joining us this year! Don’t forget to register at a walk near you http://shinealightwalk.org 💙💚

Welcome back to Fundraising Friday! NF Flocking Flamingos were out and about in Yankton, SD again this year! Team Westin Warriors in South Dakota gets creative by using flamingos to fundraise for the Shine a Light Walk. People can donate to the team and have Westin Warriors flock a friend’s yard for them. Everyone loves this annual fundraiser and it brought in $1,110 this year!

Happy ! Today’s spotlight is shining on Oskar Nilsson and The Fighting Vikings team from Washington State. Oskar who is now 6 was preliminarily diagnosed at 2 weeks and confirmed by genetic testing at 2 months old. When asked why they participate in the walk his mom Elisabeth shares, “The walk gives me hope, support, and a community and allows me to provide the same to other families in the same position.” Every year they look forward to seeing how all their NF Hero’s have grown and it’s like a family reunion of support. Walk is important to Elisabeth and her family because it gives them a community that understands the fear and anxiety. Elisabeth states, “We WILL end NF but we can’t do it alone.” We can’t wait to see this energy at walk in the fall! Make sure you register at http://shinealightwalk.org

Check it out, you can Shine a Light on NF every day with these awesome fundraising incentives! Don’t forget to register for a walk near you and start fundraising to earn super cool prizes 💙💚

Go to shinealightwalk.org to register TODAY

Even though NF Awareness Month is ending today, our Shine a Light Walk Season is just getting started! You can still raise awareness for NF and help fundraise to find a cure. Register today at http://shinealightwalk.org

Today for we highlight Davina from Dallas, TX. Davina and her father both live with NF1. Her mom Shyenne tells us, “I got involved because of my daughter and husband. We walk each year to meet people and learn more about NF since this is all new to me.” We are so excited to see Davina and her family at the Dallas walk this year, and we hope we will see you at a walk this fall! Register NOW at shinealightwalk.org

We love seeing the unique ways that you fundraise and spread awareness! Nathan and the rest of the Student Government at Cox High School held a Bingo Night fundraiser in North Carolina, raising over $1,000! Nathan fundraises for his cousin Vivian who lives with NF1!

This week for we are highlighting the Steps for Scaps team in honor of Alex Scapini! Alex was diagnosed with NF2 at birth. The team got involved with walk & CTF through research and family suggestion. When asked why they participate in walk they said, “A family member passed away and we walk to celebrate and remember his life and raise money/awareness.” Every year they look forward to meeting others and having a big support group together. We are so excited to see the Steps for Scaps this year! Register for a walk near you today at shinealightwalk.org

We are so EXCITED for The Empire State Building to glow blue & green for NF Awareness TONIGHT!!

TODAY IS MAY 17, WORLD NF AWARENESS DAY!

Like, share, comment, tag, and shout it from the rooftops: Today's the day we unite our voices around the country and around the world and !

NF is a group of genetic disorders that cause tumors to grow on nerves throughout the body. It affects millions of people worldwide, and today is about shining a spotlight on this important cause. By raising awareness about NF, we can support those affected and contribute to ongoing research efforts. Visit makenfvisible.org for more NF facts, Stories of NF, infographics & brochures, videos, and so much more!

We’re so excited to bring back during NF Awareness Month! Team Jacob 2016 from Washington State walks for Jacob who is now 8 and was diagnosed with NF1 at 6 months old. When asked what they look forward to most about the Walk each year, they said “We love to meet other families who are going through the one thing they have in common which is their kids with NF!” We can’t wait to see you at this year’s Walk Team Jacob2016! Register for a Walk near you today at shinealightwalk.org

Get ready for another weekend of walks! This weekend we will be in Minnesota, Virginia, and Seattle! It's not too late to register and join us! www.shinealightwalk.org

🥁 Drum roll please! 🥁 The winner with a whopping 79 NEW registrations in the last week is IOWA! Nationwide we had 578 new registrations in the last 7 days. We can't wait to see you on walk day! Children's Tumor Foundation

It's the Shine a Light Walk's very first nationwide contest to see who can get the most people to sign up between 8/7/23 and 8/14/23. The city that has the most participants sign up this week will win an amazing prize that everyone in that city can enjoy on walk day!

What can you do to make sure your city has the bragging rights? Sign up today and then get your friends, family, hair dresser, mailman, book club to sign up too!

Make sure and go to www.shinealightwalk.org TODAY to register for your walk and share this link on social to spread the word.

Impact for NF: Published today in STAT, a thought-provoking piece from Children's Tumor Foundation President Annette Bakker on the critical need to distinguish between “repurposing” FDA-approved drugs for new indications vs “repositioning” non-FDA approved shelved assets for emerging indications. The terms are often used interchangeably, but clarifying the distinction will help accelerate the development of cures not just for NF (neurofibromatosis and schwannomatosis), but for all rare diseases that collectively affect over 30 million Americans.

Read more: https://www.statnews.com/2023/06/27/drug-repurposing-repositioning-rare-diseases/

A seemingly small semantic issue is a major roadblock to develop treatments for rare diseases Clarifying this distinction will help accelerate the development of cures for rare diseases.

The NF Summit - the annual patient & family gathering - is just a few weeks away! And we're thrilled to introduce our Keynote Speakers: Derrick Helton & Conrad Cordova, two adults living with NF. A diagnosis of NF is not all they have in common; Derrick and Conrad are also Arizona residents, great friends, and steadfast in their determination not to allow NF to derail their lives. Read more at https://www.ctf.org/news/nf-summit-2023-keynote-speakers. Then, go register at nfsummit.org and join us in Scottsdale - it's not too late!

Kellan and his family are joining us at the Nashville Shine a Light Walk for the first time this year. Diagnosed in 2020, Kellan’s family wanted to join the walk “to bring awareness to NF and for Kellan to see kids with the same disorder he has.” We are so excited to meet Mama’s Meatballs and experience the community that our walks bring to cities all across the country. Sign up for a walk near you at www.shinealightwalk.org.

Sarah Kilpatrick was looking for ways to raise awareness for the three NF heroes in her life, Maddison, Makayla, and husband Jeremy. She discovered a Shine a Light Walk was happening near her and immediately signed up and asked friends and family to join their team. Maddie & Kay’s Madrigals love “meeting new families and seeing all the kids play together on walk day. The NF Community has been like a second family to us when we needed the extra support around so many unknowns”. Join us this year by registering for a walk near you and discover your second family within the Children's Tumor Foundation community!

Joe is from Cincinnati and leader of 🦸‍♂️ AvenJOES Assemble 🦸‍♂️, and he tells us why the walk is so important. “The Shine a Light Walk provides us with a day when we are not considered “other” or “different” but are celebrated and surrounded by other people like us who share our struggles. Every year I’m amazed by how much our community grows.” Couldn’t have said it better ourselves. Next weekend we kick off our walk season in Cincy. We can’t wait to see Joe and ALL of our incredible heroes and families. Children's Tumor Foundation

🌍💙 Today is World NF Awareness Day! 💙🌍

Let's come together and unite our voices to spread awareness about NF and support those living with it. NF is a group of genetic disorders that cause tumors to grow on nerves throughout the body. It affects millions of people worldwide, and today is about shining a spotlight on this important cause.

💚 What can you do to ?💚

1️⃣ Educate yourself: Knowledge is power, and by understanding NF, we can help break down misconceptions and promote empathy. Visit makenfvisible.org for links out to dozens of first-person experiences of living with NF.

2️⃣ Share your knowledge: Share informative posts, articles, or personal stories about NF on your social media platforms. Let's reach as many people as possible and create a ripple effect of awareness. Find the most up-to-date resources at ctf.org/brochures.

3️⃣ Support organizations: RSVP to the Make NF Visible: A World NF Awareness Day Live Event, streaming tonight at 8PM ET/5PM PT. ctf.org/live

4️⃣ Wear blue & green: Show your solidarity by wearing blue & green today! These are the official color of the End NF movement, and through this sharp sartorial choice, we demonstrate our commitment to raising awareness and raising money for research.

💙💪 Let's make a difference together! 💪💙 Follow along all day as we share more patient stories and things you can do to Make NF Visible and Shine a Light on NF! By raising awareness about NF, we can support those affected and contribute to ongoing research efforts.

The DeLeon’s will be 🌟NEW🌟 participants in the Dallas walk this year. They walk for Davina “The Diva” who is strong, amazing and a hero in every way. Davina and her dad both have NF and the family is excited to connect with others to make new friends. “We keep positive for our baby because she is a little diva and we want her to keep that energy and positivity.” We can’t wait to meet you, Davina! Children's Tumor Foundation

Maggie Bees makes the Denver Walk a family affair every year. Mom Liz tells us, "The Shine A Light walk is important to our family because it is a way to show Maggie that she isn't alone in her fight. She is surrounded by other warriors who know her struggle and supported by so many people who love her." Community is what we are all about at Children's Tumor Foundation. Join us by registering for a walk near you! www.shinealightwalk.org

Why do you walk? Many of you walk (and fundraise) for the merch! Announcing the 2023 Shine a Light Walk Incentive line up. Whether you love that water bottle, or you want that Bose speaker by the pool or outside campfire, there's something for everyone! Tell us what you are hoping to earn this year! Children's Tumor Foundation