Child Health
Illuminating Global Landmarks: Make NF Research Visible
Last Updated on May 29, 2024 by Daily News Staff
Global landmarks are set to illuminate in a stunning display of support for World NF Awareness Day. The Children’s Tumor Foundation (CTF) has organized the “Shine a Light on NF” campaign, which will see nearly 400 famous buildings, bridges, waterfalls, castles, and architectural icons light up in blue and green, the official colors of the neurofibromatosis (NF) cause.
NF is a group of genetic conditions that affects approximately 4 million people worldwide. It is known as either neurofibromatosis or schwannomatosis, and it causes tumors to grow on nerves throughout the body. The impact of NF can be severe, leading to disabilities such as blindness, deafness, bone abnormalities, disfigurement, learning disabilities, disabling pain, and cancer. Despite the significant challenges it poses, there is currently no cure for NF. However, the “Shine a Light on NF” campaign aims to raise awareness and highlight the crucial need for scientific research funding.
The “Shine a Light on NF” campaign, launched by the Children’s Tumor Foundation, has grown substantially over the years. The foundation works in partnership with NF organizations, medical and research institutions, and corporate and media partners around the world to expand global awareness of this rare set of genetic conditions. The involvement of internationally recognized landmarks is a testament to the campaign’s reach.
Landmarks such as Niagara Falls, the National Theatre in London, The City of Arts and Sciences in Valencia, and The David in Florence are among the many iconic sites that will light up in blue and green this year. This show of unity and support not only raises awareness but also sends a powerful message of solidarity to those affected by NF.
In conjunction with World NF Awareness Day, the Children’s Tumor Foundation is also launching its “Make NF Research Visible” campaign. This initiative focuses on the transformative potential of scientific research in the fight against NF. By highlighting advancements in NF scientific research and clinical care, the campaign showcases the crucial role these efforts play in improving patient outcomes.
As part of the “Make NF Research Visible” campaign, a collection of portraits and stories featuring clinicians, researchers, and patients is being shared. These compelling narratives demonstrate how increased visibility can drive further progress in NF research and provide support to those affected by the condition.
Simon Vukelj, Chief Marketing Officer of the Children’s Tumor Foundation, emphasizes the importance of the “Make NF Research Visible” campaign, stating that it aims to inspire greater support and drive further advancements. By shining a light on the incredible work being done by researchers and clinicians, the foundation aims to brighten the path forward for everyone affected by NF.
Carson McNall, a 16-year-old living with neurofibromatosis type 1, shares his experiences and hopes for a future where NF can be cured. Carson describes the chaos of living with NF at such a young age and dreams of a life free from constant appointments and worries about the future. The “Make NF Research Visible” campaign aims to turn these dreams into reality by amplifying the voices of patients and showcasing how research can transform lives within the NF community.
Neurofibromatosis encompasses a group of genetic conditions that lead to the growth of tumors on nerves throughout the body. The Children’s Tumor Foundation has initiated campaigns like “Shine a Light on NF” and “Make NF Research Visible” to raise awareness and underscore the importance of advancements in scientific research. These efforts highlight the impact of NF on public awareness, diagnosis, clinical care, and ongoing research endeavors towards finding a cure.
As the world witnesses the illumination of global landmarks and engages with the “Make NF Research Visible” campaign, it is a reminder of the power of unity and the potential for scientific advancements to bring hope and transformation to those affected by neurofibromatosis.
For the full, global list of locations Shining a Light on NF, visit ctf.org/shinealight.
For more information about NF Awareness Month and Make NF Visible, visit makenfvisible.org.
For more information about the Children’s Tumor Foundation, visit ctf.org.
About the Children’s Tumor Foundation
The Children’s Tumor Foundation is the world’s leading organization dedicated to funding and driving innovative research that will result in effective treatments for the millions of people worldwide living with NF, a group of genetic conditions that causes tumors to grow on nerves throughout the body. Through collaboration with the scientific community, pharmaceutical and biotech industries, and other key partners, we work diligently to accelerate research and development efforts, ensuring that promising treatments reach those who need them. One in every 2,000 people is born with some type of neurofibromatosis or schwannomatosis, which may lead to blindness, deafness, bone abnormalities, disfigurement, learning disabilities, disabling pain, or cancer. NF affects all populations equally, and while there is no cure yet, the Children’s Tumor Foundation mission of driving research, expanding knowledge, and advancing care for the NF community fosters our vision of one day ending NF. For more information, please visit: ctf.org.
https://stmdailynews.com/category/lifestyle/health-and-wellness/health
SOURCE Children’s Tumor Foundation
Child Health
Pediatric Cancer Goes Beyond a Victory Bell: How Research and Innovation Improve Survivorship Rates
(Feature Impact) For every tear-jerking video found online of a child ringing a bell that signifies a cancer journey victory, there are dozens, if not more, people working behind the scenes. From leading minds in cancer research to doctors, nurses and support staff, a vast network of people and decades of medical advancements make those moments possible.
In fact, in the last 10 years, the FDA approved 10 new immunotherapies and 20 molecularly targeted therapies to treat pediatric cancers, according to the American Association for Cancer Research. Those breakthroughs – and the children they impact – come with a cost, which is why Hyundai Hope on Wheels has served as a pioneer in increasing survival rates by investing $303 million in pediatric cancer research over nearly three decades.
Those funds have supported more than 1,600 grants to 210 institutions, leading to new insights into cancer biology, clinical trials and new drug development while bringing hope at all stages of a child’s cancer journey.
However, there remains work to be accomplished. According to a survey conducted by Atomik Research on behalf of Hyundai Hope on Wheels, 46% of U.S. adults believe that a child ringing a hospital bell after cancer treatment signifies the child is cancer-free and their medical journey is largely over. The reality is more nuanced than that. In fact, more than one-third of respondents said they’re not familiar with the term cancer survivorship or they have heard the term but don’t fully understand what it means.
Many health care organizations define survivorship as beginning at the time of diagnosis and continuing through treatment and beyond. According to the American Association for Cancer Research, children who survive cancer face several long-term physical and psycho-social challenges due to their cancer and treatment, including planned surgeries, additional rounds of radiation or other forms of medical treatment to address common physical challenges stemming from chemotherapy.
Survival rates continue increasing with scientific and technological breakthroughs, up from 75% to 85% in nearly three decades, representing roughly 40,000 more children surviving their diagnoses. More than 3 in 4 U.S. adults are encouraged by that progress.
For survivors, treatment is just the beginning. Research, follow-up care and long-term funding determine what comes next, and every grant funded and every survivorship program backed means more children reaching adulthood.
According to the survey, more than 80% of adults said they’re more likely to support organizations that fund survivorship services, creating opportunities to fund crucial research and support for children facing pediatric cancer. Collaboration among leading minds, made possible by funding from organizations like Hyundai Hope on Wheels, has led to the development of comprehensive approaches to help children thrive during life after cancer, including enhanced medical records, AI integration, socioemotional support and combatting long-term side effects.
Find more information and ways you can join the fight by visiting HyundaiHopeOnWheels.org.
Photo courtesy of Shutterstock
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Child Health
A child rings the cancer bell. Here’s what that moment doesn’t show
Cancer Bell: A child who’s been treated for cancer walks down the hall of a medical facility, nurses and doctors smiling at them from all corners of the room. The child rings a bell, and everyone cheers as the kid hugs their loved ones. These heartfelt videos appear regularly across social media. What helps make each of those moments possible is decades of research and innovation. For every bell-ringing child whose video goes viral online, a longer health journey awaits.
A child rings the cancer bell. Here’s what that moment doesn’t show
(Sheeka Sanahon) A child who’s been treated for cancer walks down the hall of a medical facility, nurses and doctors smiling at them from all corners of the room. The child rings a bell, and everyone cheers as the kid hugs their loved ones. These heartfelt videos appear regularly across social media. What helps make each of those moments possible is decades of research and innovation. In the last 10 years, the Food and Drug Administration (FDA) approved 10 new immunotherapies and 20 molecularly targeted therapies to treat pediatric cancers, according to the American Association for Cancer Research.
For every bell-ringing child whose video goes viral online, a longer health journey awaits. Hyundai Hope on Wheels, which has funded pediatric cancer research for nearly three decades, commissioned a survey to understand how much Americans know about that journey.
As September marks Childhood Cancer Awareness Month, what that journey actually looks like is worth understanding. According to the survey, 46% of U.S. adults believe that a child ringing a hospital bell after cancer treatment signifies the child is cancer-free and their medical journey is largely over. The reality is more nuanced than that.
When cancer survivorship begins
Many health care organizations define survivorship as beginning at the time of diagnosis and continuing through treatment and beyond. Understanding survivorship this way helps recognize that a child’s cancer journey is about more than reaching the end of treatment. It also includes managing long-term physical, emotional and medical needs that may continue for years to come.
More than a third of U.S. adults say they’re not familiar with the term cancer survivorship or they have heard theterm but don’t fully understand what it means.
According to the American Association for Cancer Research, children who survive cancer face several long-term physical and psycho-social challenges due to their cancer and treatment. Children could face planned surgeries, additional rounds of radiation, or other forms of medical treatment to address common physical challenges stemming from chemotherapy. Every child’s medical treatment plan is different based on their specific needs, but one thing is clear: Pediatric cancer survivors need ongoing support as they navigate long-term health challenges.
Supporting children to live long, full lives
More than 3 in 4 U.S. adults are encouraged by the progress in pediatric cancer, up 5 points from last year. There’s good reason to be hopeful, too. According to the American Cancer Society, the survival rate among pediatric cancer patients has increased from 75% to 85% in nearly three decades, representing 40,000 more children surviving their cancer diagnosis.
Survival rates continue to increase thanks to breakthrough science and technology, and higher standards of care. Pediatric cancer research has led to new insights into cancer biology, clinical trials, and new drug development.
More than 8 in 10 adults say they’re more likely to support organizations that fund survivorship services, which creates more opportunities to fund crucial research and support for children facing pediatric cancer.
Methodology
Hyundai Hope on Wheels commissioned Atomik Research to conduct an online survey of 1,005 adults throughout the United States. The margin of error is +/- 3 percentage points with a confidence level of 95%. Fieldwork took place March 19-26, 2026. Atomik Research, part of 4media group, is a creative market research agency.
Photo courtesy of Shutterstock
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Family
The back-to-school haircut is more than hair: Survey finds 94% of parents say their son’s appearance affects their confidence
(Sheeka Sanahon) Parents spend years styling their children, picking out just the right outfits for special occasions, choosing a haircut that suits their sweet little faces, and doing their best to keep up with how quickly they outgrow their shoes. Just as parents begin to master all the moving parts, a new variable gets thrown into the equation: the opinions of the child whose every style decision they once made.
According to survey data from Sport Clips Haircuts, a sports-themed haircutting franchise specializing in haircuts for men and boys, 84% of parents say that by the time their son reaches middle or high school, he cares significantly or somewhat more about his appearance. According to Psychology Today, physical appearance is important for adolescent children as a means to express identity and to fit in with the norms of their peers. What has changed is the amount of pressure on today’s generation of children to present themselves well; 71% of parents surveyed by Sport Clips say boys today face more pressure to look put together going into a new school year than they remember from their own school years.
Preteen and Teen Boys are Developing Their Own Sense of Style
The surveyed parents report that in the coming days and weeks before the new school year begins, more than a third of their preteen and teen boys ask for a back-to-school haircut. Another 22% of parents say both they and their boys bring it up around the same time. That’s more than half of boys already thinking about how they’ll show up on the first day.
If you thought mom and dad’s opinions mattered regarding the type of haircut they want, think again. More than half of boys ages 11 to 17 know exactly what haircut they want to get before the school year begins. Parents report that many of them are inspired by celebrities, athletes or people they follow online.
The Confidence Connection
As children get older and express more desire for choosing their style, giving them the choice to pick what’s right for them can be a great opportunity to boost their confidence. Ninety-five percent of parents say there is a connection between how confident their son feels about his appearance and how he shows up at school, in sports and social activities. Young boys and their parents are thinking about more than just the haircut. Finding clothes that their son feels good in, as well as talking through what he’s most excited and most nervous about for the new school year, are all part of the preparation.
The Back-to-School Checklist
This checklist creates an important set of traditions to get the school year started off on the right foot. While 71% of parents say getting their son a fresh haircut or new hairstyle has become a reliable part of their back-to-school routine, 20% notice their child shift back into school mode when they pick out their first day outfit. For 19%, it’s when he packs or organizes his bag.
The Styles Middle School and High School Boys Are Asking For
So what styles are boys most likely to ask for to start this school year? According to the survey data, 30% of boys want a tapered fade like the haircut U.S. goalkeeper Matt Freese wore during the 2026 World Cup. Nearly a quarter (24%) of respondents said their child wants a classic cut, like the kind of style YouTuber Caylus Cunningham tends to wear. Only 10% of boys are requesting a longer or shaggy style, like actor Jacob Elordi, and even fewer are looking for fringe bangs, the broccoli cut (which is short on the sides and curly on top) or a buzz cut.
A few parents aren’t sure what kind of look their child is going for this school year. Eight percent say they’re not even sure what to call the hairstyle preferred by the boys in their lives.
Methodology: Sport Clips Haircuts commissioned Atomik Research to conduct an online survey of 1,000 adults throughout the United States. The sample consists of U.S. parents of boys aged 11 to 17. The margin of error is +/- 3 percentage points with a confidence level of 95 percent. Fieldwork took place between July 9 and July 15, 2026. Atomik Research, part of 4media group, is a creative market research agency.
Photo courtesy of Shutterstock (children on school bus)
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