Child Neurology Foundation

Exciting Opportunity! Registration is now open for Episode I of our three-part webinar series: Navigating Insurance for Genetic Testing. This episode, "Understanding Your Insurance," features E. Gay Grossman, Patient Advocacy & Engagement of GeneDx. Learn from her insights and expertise as we break down insurance barriers step by step. Genetic testing can play a critical role in uncovering answers, but insurance coverage is often a hurdle. Let us help you feel more prepared and informed. ?? Episode Highlights: ?? Learn how to read and understand your Summary of Benefits ?? Stay organized as you navigate coverage ?? Decode common insurance terms and definitions Start removing barriers to genetic testing for your child today. Register now and take the first step toward clarity: https://lnkd.in/eKdNigpV #genetictesting #InsuranceTips #CNFCommunity #childneurology #ChildNeurologyFoundation

Spent #GeneticCounselorAwarenessDay representing Child Neurology Foundation at Illumina’s NeuroGen Nexus: Accelerating Access event learning from physicians, genetic counselors, and other patient advocates and funding pathways for collaboration to expand access to and awareness of genetic testing for everyone it can benefit. Thanks to Melissa Dempsey, Cody Barnett, and the rest of the Illumina team for such an incredible and energizing day!

In honor of National Epilepsy Awareness Month, sign up for a training at bit.ly/SFALiveTraining and encourage others to get certified in Seizure First Aid. Together, we can make a difference! #NEAM2024 #ShareYourPurplePower

Caregiving is one of the most selfless roles, yet caregivers often face immense stress and burnout. At CNF, we understand that prioritizing your well-being is crucial—not just for you but for your family too. That’s why we’re sharing 6 simple ways to nurture your mental and emotional health: 1?? Micro-moments of rest: Take 5 minutes for deep breathing or quiet reflection. 2?? Celebrate small wins: Acknowledge every tiny success, no matter how small. 3?? Set boundaries with love: Learning to say “no” or delegate can empower you and those around you. 4?? Use “joy anchors” in your space: Keep small, meaningful items that bring you happiness within reach. 5?? Plan mini adventures: Short outings, like a walk in the park, can bring a much-needed change of scenery. 6?? Create tech-free zones: Disconnect from screens and reconnect with yourself and your surroundings. Let’s support each other in making these practices part of our daily routine. What’s your go-to method for finding balance? Share in the comments! ?? #CaregiverSupport #RespiteCare #CNFCommunity #MentalHealth #CaregiverLife #SEEN #childneurology

Family caregivers play a vital role in complex medical care, but burnout is a real risk. Respite care can be a game-changer, providing vital breaks to recharge. NASHP | National Academy for State Health Policy has an article exploring Medicaid-funded respite options tailored for families managing chronic and complex needs: https://lnkd.in/e_wArX6Z At CNF, we believe in equipping caregivers with the tools they need. Check out our Respite Care Notebook for practical advice on accessing and maximizing respite services: https://lnkd.in/epgZsJH It’s time to advocate for better policies: ? Expand Medicaid respite care funding ? Promote telehealth options for virtual support ? Standardize caregiver training programs ? Advocate for paid caregiver leave Caregivers are not just supporting their loved ones; they are a critical part of their care team. Let’s work together to build a stronger support system. #HealthcareInnovation #CaregiverSupport #FamilyCaregivers #RespiteCare #CNFCommunity #SEEN #childneurology

?? A HEARTFELT thank you to everyone who made the Child Neurology Foundation Symposium "Caring for Children with Medical Complexity" at the Child Neurology Society 2024 53rd Annual Meeting, a success! ?? We are deeply grateful to our incredible speakers, including our amazing Facilitator, M. Scott Perry, MD (Cook Children's Health Care System), Cristina Vargas (Parent Advocate, Principal CEO Juju and Friends CLN2 Warrior Foundation), John Mytinger, MD (Nationwide Children's Hospital), Anne Marie Morse, DO, FAASM (Geisinger), Jessica Nickrand, PhD (Child Neurology Foundation), Monika Jones, JD (Pediatric Epilepsy Surgery Alliance), Ahmed, T Abdelmoity, MD, MBA, MS, FAAP, FAES, (Children's Mercy Kansas City), and Le Pichon J.B., MD, PhD, FAAP (Children's Mercy Kansas City). Your stories and expertise continue to inspire and drive change. A special shoutout to our Corporate Sponsors, Jazz Pharmaceuticals, LivaNova Epilepsy | VNS Therapy? for Epilepsy, for their commitment to support. And to our amazing Community Partners— AHCF Alternating Hemiplegia of Childhood Foundation, Malan Syndrome Foundation, and the Rare Epilepsy Network (REN)—thank you for your collaboration and commitment to advancing care and support for families. Together, we’re fostering connections and creating solutions that matter. Here’s to continuing this vital work! ?? #ChildNeurology #CNS2024 #CommunitySupport #Gratitude

Caregivers of children with medical complexity face enormous challenges: managing care coordination, financial strain, and mental health struggles, all while advocating for their child. This recent article highlights these pressing issues and emphasizes the need for better support systems, including: ?? Improved respite care ?? Enhanced communication among healthcare teams ?? Advocacy resources At the Child Neurology Foundation, we aim to create a positive impact by supporting caregivers who are at the heart of their child’s well-being. Through connection, education, and action, we’re working toward a future where caregivers feel equipped, empowered, and included. ?? Explore key insights from the American Academy of Pediatrics (AAP) research article, “Fitting the Pieces Together: The Experiences of Caregivers”. Read more here: https://lnkd.in/eTpykaDN #CaregiverAdvocacy #ComplexCareSupport #CaregivingCommunity #CNFCommunity #SEEN #BeSeenBeHeard #NationalCaregiversMonth

?? Exciting News: We're launching Navigating Insurance for Genetic Testing, a 3-part webinar series aimed at easing the challenges of insurance coverage for genetic testing. Episode 1: Understanding Your Insurance will guide you in decoding your policy, organizing your paperwork, and understanding key terms. Future episodes will cover the appeals process and share resources to help you navigate this complex journey with confidence. Stay tuned for dates and join us in this empowering series. #GeneticTesting #WebinarSeries #InsuranceSupport #CNFCommunity #childneurology

Approximately 470,000 children in the U.S. live with epilepsy, with 50,000 new cases diagnosed annually. That’s nearly half a million young lives navigating a condition that can look different for each child. This National Epilepsy Awareness Month, let’s take a moment to better understand epilepsy and help break the stigma surrounding it. Together, we can create a world where children with epilepsy—and their families—feel seen, supported, and empowered. ?? Learn more about epilepsy from the Centers for Disease Control and Prevention here: https://lnkd.in/eUKe-UiP #EpilepsyAwareness #SeizureSupport #BreakTheStigma #NationalEpilepsyAwarenessMonth #ChildNeurologyFoundation #childneurology

It is challenging caring for children with medical complexity. That’s why it is so important to discuss innovative solutions. Join us on Monday, November 11 at 8:00 a.m. for a special symposium we are hosting at the Child Neurology Society 53rd Annual Meeting in San Diego. Pre-registration for the symposium is required, in addition to registration for the annual meeting: https://lnkd.in/gGgJ4P6y Insights will be presented from the perspectives of patients, caregivers, and medical providers.