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.
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SOURCE Children’s Tumor Foundation
Food and Beverage
A Lesson in Kindness, Inclusion and How Kids Eat Differently
Kids Eat Differently: The school year brings new classmates, routines and opportunities for children to learn about people whose experiences may be different from their own. They could include friends who use a wheelchair, carry an inhaler or even receive nutrition through a feeding tube.
A Lesson in Kindness, Inclusion and How Kids Eat Differently
(Feature Impact) The school year brings new classmates, routines and opportunities for children to learn about people whose experiences may be different from their own. They could include friends who use a wheelchair, carry an inhaler or even receive nutrition through a feeding tube.
Watch this video to learn more
For families who rely on tube feeding, it is an essential part of daily life but is often understood only by those who experience it. That limited awareness can leave children who are tube fed and their families feeling isolated or unseen, according to Gerard Minor, a pediatric gastroenterology and hepatology specialist.
Parents can use everyday questions as opportunities to help children understand there are many ways people receive nourishment. Teachers, classmates, caregivers and communities can also help make tube feeding part of the everyday conversation around childhood rather than something that separates children from it.
“Helping children understand those differences early can encourage curiosity, kindness and inclusion,” Minor said.
To help bring greater awareness, understanding and representation to children and families who experience tube feeding every day, Compleat, a leader in tube feeding formulas, launched “What Is Better Than How,” featuring “Sesame Street’s” Elmo and his signature warmth and curiosity. The original song celebrates the many ways people eat. Some people eat with a fork, some use a spoon and some use a tube, reinforcing a simple message: What matters is not how you eat. What matters is that you are nourished, loved and included.
To hear the song, create a personalized version and learn more about the campaign, visit Compleat.com/WhatIsBetterThanHow.
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Child Health
Changing the Landscape of Childhood Cancer Survivorship
Childhood Cancer: hile “cancer” is a term no family wants to hear, especially when it comes to their children, there is reason for hope. Today, 85% of children diagnosed with cancer survive at least five years. Survival is only part of the journey, however.
Changing the Landscape of Childhood Cancer Survivorship
(Feature Impact) While “cancer” is a term no family wants to hear, especially when it comes to their children, there is reason for hope. Today, 85% of children diagnosed with cancer survive at least five years, according to the National Cancer Institute, up from 75% three decades ago.
Watch this video to learn more
“This progress is driven in large part by dedicated research,” Hyundai Hope on Wheels Board Member Kevin Reilly said. “Over the last 28 years, Hyundai Hope on Wheels has committed over $300 million in pediatric cancer research and program grants, awarding more than 1,600 grants to 210 medical institutions nationwide, impacting thousands of young lives each year.”
Survival is only part of the journey, however. Nearly half (46%) of U.S. adults believe a child ringing the hospital bell after cancer treatment means the child is cancer-free and their medical journey is largely over, according to a survey conducted by Atomik Research on behalf of Hyundai Hope on Wheels. For the children and families living through a diagnosis, the reality is far more complex.
“The reality is that healing continues long after treatment, which is why sustained investment in survivorship care is a priority for us,” said John Guastaferro, executive director of Hyundai Hope on Wheels.
Isabella Franco-Capps, 11, understands that journey firsthand. Diagnosed with B-cell acute lymphoblastic leukemia at age 5, her journey took two years before she could say she’s “a cancer survivor.”
“I was diagnosed with b-cell acute lymphoblastic leukemia,” she said. “This began my two-year-long journey of scans, pokes, chemotherapy and hospital stays. And now I’m a cancer survivor.”
Fellow Hyundai Hope on Wheels National Youth Ambassador, Jackson Trihn, 12, is using his voice to call for continued research and to bring hope to others.
“The role … is being able to share my story,” he said. “Not just to spread awareness but to spread hope to kids that need it. And awareness is so important because people don’t understand how hard pediatric cancer can be.”
Continued progress can help ensure more children ring the bell and receive the care and support they need long after they’ve had the opportunity to do so. To learn more about these efforts and how you can help, visit HyundaiHopeOnWheels.org.
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Women's Health
From Pregnancy to Parenthood: How Medicaid Supports Women Across the Maternal Health Journey
When women are planning, expanding or raising families, access to healthcare is a vital source of physical and mental support. For millions of women and families across the U.S., Medicaid provides that support, enabling parents and children to access the reproductive, maternal and pediatric healthcare they need to thrive.
(Feature Impact) When women are planning, expanding or raising families, access to healthcare is a vital source of physical and mental support. For millions of women and families across the U.S., Medicaid provides that support, enabling parents and children to access the reproductive, maternal and pediatric healthcare they need to thrive. It’s there for anyone who needs it, from working adults to families navigating unemployment or disability.
To learn about how Medicaid supports growing families through every stage of the parenthood journey, consider this information from the maternal health experts at Community Catalyst.
Making Family Planning Possible
When people are able to plan and prepare to welcome children into the world, it can remove a lot of stress, uncertainty and complication from their journeys. Medicaid family-planning coverage may include reproductive health counseling, pre-pregnancy screenings, many forms of FDA-approved contraception and other preventive services. Comprehensive access to birth control allows women and couples to make their own decisions about pregnancy timing or spacing between siblings.
Supporting Healthy Pregnancies
Pregnancy is no small endeavor, and a woman with a healthcare team at her side is better prepared to face whatever challenges may arise. Pregnancy often requires frequent appointments for ultrasounds, laboratory testing and monitoring – all of which are made possible and affordable through Medicaid. Since 1 in 4 Medicaid recipients are women ages 15-49, this care can make a difference during their childbearing years.
Covering Labor and Delivery Costs
Labor and birth can be unpredictable, but being able to afford them shouldn’t be. Without Medicaid, which finances approximately 41% of U.S. births, based on data from the National Center for Health Statistics, the cost of hospitalization and delivery could be financially devastating to young families. Coverage for labor, delivery and NICU care, if needed, gives parents the ability to focus on their new babies instead of overwhelming medical bills.
Providing Postpartum Care
The need for maternal healthcare doesn’t end when mother and child are discharged from the hospital. Physical recovery takes time, especially if there were any complications during the pregnancy or delivery. Beyond that, postpartum women may need mental health support, treatment for chronic conditions, contraception renewals and other health services that Medicaid can provide. Currently, 49 states plus Washington, D.C. have extended postpartum Medicaid coverage to 12 months, which helps new mothers get continuous care without worrying about insurance lapses.
Caring for Growing Kids
Nearly half of all Medicaid recipients in the U.S. are children ages 0-18 – and sometimes kids qualify for Medicaid even when their parents don’t. The program can help new parents stay up to date with well-child visits for infants, immunizations and ongoing preventive care throughout childhood.
To learn more about access to essential services at every stage of life, visit communitycatalyst.org/maternalhealth.
Filling Gaps in Pregnancy and Postpartum Care: Kayla and Tru’s Story
When Kayla found out she was pregnant at 24 years old, she had no idea how she was going to afford all the costs that were coming. Despite having part-time employment and primary insurance through her mother, she faced gaps in coverage for pregnancy care.
Qualifying for Medicaid changed everything. Not only did it cover Kayla’s prenatal visits, labs, ultrasounds and delivery, but once her son Tru was born, both mother and baby required an extended hospital stay. Medicaid made it possible for Tru to get the care he needed in the NICU while Kayla recovered from birth complications.
Afterward, the program continued to cover Kayla and Tru for follow-up appointments and well-child visits. She’s grateful it was there during her time of need and has one simple message to share: If you qualify for Medicaid, apply.
“You never know what’s going to happen,” she said. “I didn’t expect to be in the hospital as long. I didn’t expect for him to be where he was. But it was definitely needed and helpful.”
Photo courtesy of Shutterstock (mother leaning over hospital bassinet)
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