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

4 consejos para prepararse ante desastres naturales que pueden impactar negativamente la salud física y mental

(Family Features) Mientras elabora su lista de verificación de preparación para emergencias, también es importante proteger su corazón y salud general después de un huracán, tornado u otro desastre natural.

Los expertos de la Administración Nacional Oceánica y Atmosférica predicen por séptimo año consecutivo una temporada de huracanes en el Océano Atlántico superior al promedio. Las investigaciones muestran que no es sólo la devastación física lo que afecta la salud y la seguridad de las personas en el camino de un desastre natural.

De hecho, en un estudio presentado en las sesiones científicas de Epidemiología, prevención, estilo de vida y salud cardiometabólica de 2021 de la American Heart Association, los investigadores encontraron que existían mayores tasas de presión arterial alta, obesidad y prediabetes entre los sobrevivientes del huracán María en Puerto Rico en 2017, así como una mayor incidencia de enfermedades cardíacas y ataque cerebral dos años después de la tormenta en comparación con dos años antes del huracán.

No son sólo los huracanes los que pueden tener un impacto negativo en la salud cardiovascular. Un estudio publicado en la revista “Hypertension” encontró un aumento significativo en los niveles de presión arterial y la incidencia de presión arterial alta entre las personas que se vieron obligadas a evacuar después del gran terremoto del este de Japón en 2012.

Gustavo E. Flores, M.D., miembro del comité de Atención Cardiovascular de Emergencia de la American Heart Association, dijo que hay varios factores que pueden conducir a un aumento de la enfermedad y el riesgo cardiovascular enfermedad de un desastre natural.

“Durante y después de una tormenta, muchas personas experimentan estrés y traumas extremos, lo que, según las investigaciones, puede provocar un aumento del riesgo de enfermedad cardiovascular”, afirmó. “El impacto puede ser más intenso para los pacientes con enfermedades cardíacas y accidentes cerebrovasculares. Además, después de un desastre natural importante, la destrucción de propiedades y las evacuaciones afectan muchos recursos de apoyo básicos. Esto puede dificultar la consulta a un profesional de la salud para controles de rutina o para reabastecer o ajustar medicamentos, especialmente para las poblaciones más vulnerables”.

Flores, presidente e instructor jefe de Emergency & Critical Care Trainings, LLC, dijo que es importante que las personas estén preparadas y planifiquen con anticipación. Considere estos rápidos consejos de Flores y la American Heart Association, que celebra 100 años de servicio para salvar vidas como la principal organización sin ánimo de lucro del mundo centrada en la salud del corazón y el cerebro para todos:

• Tómese el tiempo para anotar cualquier condición médica, alergias y medicamentos, incluidas las dosis y la hora en que toma los medicamentos, junto con el nombre, la dirección y el número de teléfono de su farmacia. Guarde la información con cualquier otro “kit de emergencia” que tenga a mano para una evacuación rápida.
• Si necesita evacuar, aunque sea temporalmente, lleve sus medicamentos e información de salud en una bolsa de plástico con cierre para ayudar a mantenerla seca.
• Si su medicamento se pierde, se daña con el agua o se quedó atrás cuando evacuó, investigue las farmacias abiertas y solicite un resurtido lo más rápido posible. Algunos estados permiten a los farmacéuticos hacer excepciones médicamente necesarias en ciertos tipos de resurtidos de recetas durante una emergencia.
• Utilice el Plan de preparación del paciente si tiene diabetes y usa insulina. Allí encontrará una lista de verificación de suministros y pautas para prepararse para una emergencia.

Otra forma de prepararse para una posible emergencia médica es aprender a realizar reanimación cardiopulmonar (RCP) con las manos únicamente y a utilizar un desfibrilador externo automático hasta que llegue la ayuda. Si se realiza correctamente, la RCP puede duplicar o triplicar las posibilidades de supervivencia de una persona.

Visite Heart.org para obtener lo último sobre la salud del corazón y la página de recursos para desastres para obtener una amplia gama de información útil.

Foto cortesía de Shutterstock

SOURCE:
American Heart Association

WESTHAMPTON, N.Y. /PRNewswire/ –The Bob Woodruff Foundation is thrilled to announce the third annual Veterans Classic will take place at the Westhampton Country Club on Monday, May 20 beginning at 10:30 am. In addition to the golf tournament, guests will have the opportunity to participate in a pickleball clinic as part of the afternoon’s events. The Veterans Classic also includes brunch, dinner, cocktails, and an awards ceremony. The Patriot Parachute Team will jump in at 11:30 a.m., kicking off the day’s events. Proceeds from the event benefit Bob Woodruff Foundation’s work in mental health for the military and veteran community and their families. Additional information, including registration details, can be found at bobwoodrufffoundation.org/event/veterans-golf-classic.

“We’re kicking off the summer in the best possible way, by gathering on the greens to play golf with some of our favorite people and veterans,” said Anne Marie Dougherty, CEO of the Bob Woodruff Foundation. “The Bob Woodruff Foundation Veterans Golf Classic will raise awareness that helps strengthen communities and support the health and well-being of veterans and military families. We look forward to this event as we remember and honor those who served while working to ensure that our service members and vets—of today and tomorrow—have everything they need to thrive.”

The Patriot Parachute Team, a veteran-owned and operated company, will return for an exciting skydiving performance. This year, the pros will be joined by two guests that won the opportunity to join the team at last year’s event. The Patriot Parachute Team performs around the nation to inspire the next generation of patriots and raise awareness for veteran causes to include transitioning from active duty to civilian.

“They say golf is a good walk spoiled,” said Bob Woodruff, ABC correspondent and Foundation co-founder. “I say our Veterans Golf Classic is a good time to talk about one of the most important issues facing military families: kids’ mental health. In 2023, we committed $1 million in support of military children’s mental health. We met that goal and are continuing to support our grant partners who bring clinical and therapeutic expertise to this area.”

Proceeds from this year’s Veterans Classic will support mental health initiatives for veterans, with a focus on military children’s mental health. Approximately 20% of veterans experience mental health problems, including post-traumatic stress disorder (PTSD), severe depression, and anxiety. While the Veterans Association (VA) provides quality care for veterans, only 60% of veterans were eligible for VA care, with roughly half using their benefits, as of 2016. The Bob Woodruff Foundation helps to bridge the gap by funding programs that increase availability and access to high-quality mental healthcare.

For military children, mental health is at a crisis point. Blue Star Families’ Military Family Lifestyle Survey found that 43% of active-duty families rated at least one of their children’s mental health as “fair,” “poor,” or “very poor.” To increase access to quality care, the Bob Woodruff Foundation makes investments in initiatives that provide mentorship opportunities to bolster military-connected children’s social support and emotional wellbeing, train clinicians so they are better equipped to serve children, and cover treatment costs that are ineligible for or not fully covered by insurance.

Golf has also proven to be beneficial for mental health. This physical activity can be effective in improving mild-moderate depression, reducing anxiety, improving confidence, and boosting self-esteem. Golf also offers an opportunity for socialization and building community, something veterans can experience a major loss of when transitioning out of the military.

Last year’s Veterans Classic more than $400,000 to support the Foundation’s mission to ensure that our nation’s veterans, service members, and their families have stable and successful futures. Since 2006, the Foundation has invested more than $159 million to help make sure they have successful futures. The event takes place ahead of Memorial Day, the federal holiday mourning the US military service members who have died while serving in the United States Armed Forces.

For the Veterans Classic, foursomes are $10,000. Hole sponsorships are available and include signage recognition and two dinner tickets for $1,000 per hole. Individual playing spots are available for $2,500, and those players will be paired with a group. Caddies are included. For more information, including registration, please contact Dave Woodruff at dave.woodruff@bobwoodrufffoundation.org.

ABOUT THE BOB WOODRUFF FOUNDATION 
The Bob Woodruff Foundation was founded in 2006 after reporter Bob Woodruff was wounded by a roadside bomb while covering the war in Iraq. Since then, the Bob Woodruff Foundation has raised awareness about the tough challenges veterans and military families are facing, and invested in solutions to help support them in the next chapter of their lives. To date, the Bob Woodruff Foundation has invested over $159 million to ensure that our nation’s veterans, service members, and their families — those who stood for us — have stable and successful futures. Visit the Bob Woodruff Foundation for more information.

SOURCE Bob Woodruff Foundation

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