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Illuminating Global Landmarks: Make NF Research Visible

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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.

Global landmark illuminated in blue and green for neurofibromatosis and schwannomatosis awareness, highlighting the importance of NF research visibility.
Young man living with neurofibromatosis type 1 surrounded by NF researchers and clinicians

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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Lifestyle

4 Tips for Summer Water Safety

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(Family Features) Drowning is a leading cause of death for children ages 1-4, according to the Centers for Disease Control and Prevention. During the summer months, when water activities are more prevalent, drowning is more common, according to the National Safety Council.

Extreme heat may increase incidents of cardiac arrest and an average of 33 drownings occur in the U.S. each day, one-third of which are fatal. To protect your loved ones when playing in and around water this summer, keep these tips from the American Heart Association in mind:

Never swim alone. Children always need supervision, but even adults should swim with a buddy so someone can call for help if an unexpected problem arises. Swimmers can get cramps that hinder movement in the water and slips and falls can happen to anyone.

Wear protective devices. U.S. Coast-Guard-approved life jackets provide the best protection for someone who is in the water and unable to safely reach solid footing. When on a boat, all passengers should wear life jackets in case of an accident, and young and inexperienced swimmers should wear one any time they’re near water.

Choose your swimming location wisely. Avoid unknown bodies of water where hazards such as tree limbs or rocks may be hidden below the surface. Also avoid waterways with strong currents, such as rivers, that can easily carry even the strongest swimmers away. Instead, choose swimming pools and locations with trained lifeguards on duty.

Learn cardiopulmonary resuscitation (CPR). In the event of a drowning, no matter the age, the American Heart Association recommends rescue breaths along with chest compressions to keep oxygen circulating to the brain. Only 39% of those who participated in a consumer survey said they are familiar with conventional CPR and only 23% know about Hands-Only CPR.

Consider these ways to learn CPR and join the Nation of Lifesavers as an individual, family, organization or community.

  • Watch online. Learn the basics of Hands-Only CPR by watching an instructional video online. Hands-Only CPR has just two simple steps:
    1. Call 911 if you see someone suddenly collapse.
    2. Push hard and fast in the center of the chest to the beat of a familiar song with 100-120 beats per minute, such as “Stayin’ Alive” by the Bee Gees.
       
  • Immerse yourself. Through a virtual reality app, you can learn how to perform Hands-Only CPR and use an automated external defibrillator (AED) then put your skills to the test in real-life scenarios.
     
  • Learn at home. Learn basic lifesaving skills in about 20 minutes from the comfort and privacy of home with CPR Anytime kits. The Infant CPR Anytime program is for new parents, grandparents, babysitters, nannies and anyone who wants to learn lifesaving infant CPR and choking relief skills. The Adult & Child CPR Anytime Training kit teaches adults and teens Hands-Only CPR, child CPR with breaths, adult and child choking relief and general awareness of AEDs.
     
  • Take a course. Get a group together and find a nearby class to learn the lifesaving skills of CPR, first aid and AED.
     
  • Turn employees into lifesavers. Help make your workplace and community safer one step at a time by committing to CPR training for your employees or coworkers.

Visit heart.org/nation to access more summer safety resources and find a CPR course near you.

Photo courtesy of Shutterstock


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American Heart Association

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Lifestyle

Nurturing the Mental Health of Young Children

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mental health

(Family Features) The earliest years of children’s lives lay the foundation for their social and emotional well-being, setting the stage for success in school and beyond. For parents, caregivers and educators, it’s crucial to prioritize and nurture the mental health of children in their care.

Dr. Lauren Loquasto, senior vice president and chief academic officer at The Goddard School, and Dr. Kyle Pruett, clinical professor of child psychiatry at Yale School of Medicine and member of The Goddard School’s Educational Advisory Board, share this insight and guidance to support children’s mental well-being.

Understanding Mental Health in Young Children
Mental health influences how everyone – including young children – thinks, feels and behaves, impacting the ability to cope with stress, build relationships and navigate life.

The development of mental makeup is influenced by both nature (inherited genetic and biological factors) and nurture (environmental factors). Each person is a combination of a unique temperament combined with life experiences, including family, culture and education.

In young children, there is no distinction between mental and physical health. The brain and body are growing and developing rapidly. By 6 months, children can begin to feel overwhelmed by negative experiences. It’s vital to understand that the earliest interactions with children can have lasting social and emotional consequences.

Causes for Concern
When it comes to young children’s mental health, there’s no straight line dividing expected and worrisome behaviors. That line is wiggly and can shift. That said, it’s always concerning when children fall off their developmental tracks.

Infants are expected to partake in “serve and return” activities. They provide signals about how they feel or what they need and caregivers respond to those cues. When those signals stop and the child becomes exceedingly passive, that’s a concern.

Toddler troubles are among the most difficult to diagnose. Many are familiar with the concept of the “terrible twos;” deciphering between developmentally appropriate and worrisome behaviors can be challenging. Signs of concern – especially if they occur constantly – include excessive aggressiveness, a consistent lack of control and screaming instead of talking.

For pre-kindergarteners and kindergarteners, tantrums should be over. They should be interested in making friends and mastering their vocabulary and language. If they aren’t displaying interests or are exhibiting a lack of self-regulation, such as hurting others or animals, seeking help is appropriate.

Seeking Help
If concerns are identified, parents should contact their pediatric care provider. In some cases, they may recommend seeking assistance from a mental health provider, such as a therapist. Selecting the right provider – one with training and experience with working with children – is essential. Lean on your network, including your pediatric care provider, friends and family, to identify the best option.

Supporting Early Social and Emotional Development

  1. Understand your child’s behavior – particularly if they aren’t verbal – is their way of communicating. Narrate what your child is experiencing and label emotions. For example, “I see you’re angry. Can I help you put your shoes on?”
     
  2. Model social and emotional self-control. For example, “I’m frustrated. I’m going to pause, take deep breaths then tell you what I need.” This gives children coping techniques they can practice themselves.
     
  3. Be a good example. Model, for instance, how to be a good friend, show respect and use good manners.
     
  4. Partner with your child’s teachers. There should be two-way dialogue presenting potential concerns.
     
  5. Don’t rush to diagnose issues. Remember children save their “toxic waste” – big, negative feelings – for their parents because they trust them. Your experiences with your child may be different than others’ experiences. Be cautious to avoid a quick reaction. Work to understand what your child is trying to convey. Seek information from others.
     
  6. If a child is exhibiting anxious behavior, which is normal when encountering new situations, be present, listen, observe, answer questions, label emotions and provide reassurance. Don’t overreact to fears. Young children are learning to deal with the unknown and, just like learning to ride a bike, it takes time and comfort to develop the skills to manage those emotions.

To watch a webinar featuring Loquasto and Pruett providing additional guidance, and access actionable parenting insights and resources, visit the Parent Resource Center at GoddardSchool.com.

Photos courtesy of Shutterstock


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The Goddard School

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Child Health

4 Things Parents and Youth Athletes Should Know About Concussions

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(Family Features) Despite the attention drawn to the topic of concussions over the past decade, it can be difficult to find readily available answers about what parents and young athletes should do after sustaining a concussion.

The Katsuyama family started 2023 without a single concussion, even with quite a few hockey and lacrosse seasons under its belt. That changed when Rylan, 11, received two concussions within five months from sports. One week after Rylan’s second concussion, his brother, Brandon, 13, was illegally checked from behind in a hockey game and sustained his first concussion. After clearing protocol in four weeks, he suffered a second concussion six weeks later.

Both boys endured months of headaches, missed school, dizziness, nausea and the added difficulty of navigating a significant injury peers and adults couldn’t see.

Their father, Brad Katsuyama, co-founder of IEX – a disruptive stock exchange featured in the best-selling book by Michael Lewis, “Flash Boys: A Wall Street Revolt” – sought out expert opinions to guide his family’s decisions and shares some acquired knowledge to help parents and athletes.

1.      Brain injuries should be diagnosed by a concussion specialist.
There is no X-ray, MRI or CT scan that can show the extent of most concussion-related injuries, which makes diagnosing them subjective. Symptoms can also appear days after a hit. For example, Brandon was cleared by the emergency room after his first concussion, but two days later failed every test administered by a doctor specializing in concussions.

2.     Rushing back to play is one of the worst mistakes you can make.
Experts consistently reinforced that coming back from a concussion too soon can significantly increase long-term brain injury risks. There is likely no tournament, playoff game or tryout worth this risk. An example of how to return smartly is Patrice Bergeron of the National Hockey League’s Boston Bruins, who sat out an entire year to properly heal from a concussion.

“Patrice had four more concussions over his career, and each one was less severe than the last,” renowned concussion specialist Dr. Robert Cantu said. “That wouldn’t have happened without recovery from the first one.”

3.       Parents and kids need to be honest about symptoms.
The culture in youth sports praises toughness. Getting your “bell rung” and continuing to play can be viewed as a badge of honor. However, this same mentality can cause athletes to lie to parents, trainers and coaches to get back in the game, which can greatly increase long-term risks. Conversely, the same adults can unduly influence a potentially vulnerable player back on to the field of play. Proper diagnosis requires both adults and athletes to be level-headed and honest in their assessment of concussions.

4.    Every person and every concussion is different.
One person’s history and experience with concussions seldom carries any relevance to the concussions experienced by another. For example, Katsuyama played varsity football, hockey and rugby for four years in high school and football in college.

“For the longest time, my definition of a ‘real’ concussion was blacking out, vomiting or pupils dilating,” Katsuyama said. “My sons had none of those symptoms after their hits, but it turns out the severity of their injuries were far greater than anything I had experienced.”

The Katsuyamas turned to the Concussion Legacy Foundation and the Cantu Concussion Center, in addition to their local concussion specialist, to advise their path forward, which has led them to racquet sports and golf in the near-term and long-term playing no more than one contact sport in a school year. Learn more at concussionfoundation.org.

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Brad Katsuyama

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