Global Neuro YCare

Karina Avella is a 15 year old living in Belize, who has befriended her teacher's mother, Arlene, as she is living with ALS. Using GNYC's Graphic novel for youth on ALS, Karina wrote a report for her science class discussing how ALS works in the body and how it has changed her friend, Arlene's, life. In her report Karina wrote, "ALS attacks the motor neurons, these cells in the brain and spinal cord are responsible for our muscle movement". As Arlene's ALS has developed, Karina discussed how their friendship hasn't changed, "ALS has taken her ability to speak but that doesn't stop her from sharing wonderful experiences, stories, and even memories." We often don't give youth enough credit for their capacity to understand disease and deal with change. Karina and Arlene's relationship is a beautiful example of how children are able to be confronted with the realities of ALS without shying away. Karina's mother wrote how thankful they were for having books written by Melinda Kavanaugh, PhD, LCSW about ALS that allowed Karina to learn more. Check out all the books/resources for children and families at the link below. https://lnkd.in/g3zTVaSF

Exciting news from GNYC! We're thrilled to have partnered with ALS Quebec to bring the latest version of YCare to French speaking families! Melinda Kavanaugh, PhD, LCSW worked closely with ALS Quebec to translate all YCare materials into French and train healthcare professionals across Montreal to deliver the program in French. This incredible YCare session reached 11 kids, ages 7-14, whose parents or grandparents are living with ALS. The day was filled with care skills, education, peer support, and lots of laughter. Parents also met with ALS Quebec staff to receive support in talking to their children about ALS and navigating the challenges it brings, ensuring the whole family has the support they need. A big thank you to ALS Quebec and the amazing allied health professionals in Montreal for making this day unforgettable. We can’t wait to do it again soon! Our partnership with Société SLA du Québec shows the power of connecting across language and culture to provide much-needed services and support to families living with ALS/MND. Interested in bringing YCare to your community? Reach out to us through the link below! https://lnkd.in/ge-vvQRX

Dr. Kavanaugh's latest article in The Lancet Neurology sheds light on a crucial, often overlooked group of caregivers: young people caring for loved ones with neurological disorders, including ALS. In the article, Dr Kavanaugh discusses the challenges young carers face---providing the same level of care as adults, yet often without the acknowledgement, resources, or support they deserve. Global Neuro YCare is dedicated to changing this. We provide critical support to young carers by: Offering culturally accessible educational materials for youth; building global partnerships to create caregiver support programs; advocating for change to improve policies and systems that affect young carers. One of the ways we are raising awareness is through our 2024 release of LUKi & the Lights, a short film about a robot diagnosed with ALS who is cared for by his friends. The film is accessible to all regardless of language and is available for free on our website. Read Dr. Kavanaugh's article in The Lancet Neurology and learn about how we are making a difference for young carers! Visit the link below to access LUKi & the Lights and explore our educational resources. https://lnkd.in/g3zTVaSF

Over 5 million children and youth in the U.S. provide care to a family member. Yet, they remain one of the most hidden and underacknowledged caregiving populations. November is National Family Caregiver Month, but for these young carers, every day is a caregiving day—including youth in families with neurological disorders. If you have a #youngcarer in your family, we’re here to help. Our resources support children, youth, young adults, and families, offering guidance on how to talk about illness, understand caregiving, and find much-needed support. Check the link below for helpful resources. https://lnkd.in/g3zTVaSF

Thank you I AM ALS for partnering with us to host a screening of LUKi and the Lights! We couldn’t be more proud to see LUKi shining their light and helping children around the globe understand #ALS #MND. We look forward to welcoming you all, and sharing the film and all the resources we created at Global Neuro YCare - including LUKi coloring book and resources for families and professionals- available at www.globalneuroycare.org. See you all on the 12!!! The ALS Association Big Grin Productions Melinda Kavanaugh, PhD, LCSW Sascha Groen Adrian Ochoa Toby Cochran Lorri (Knox) Carey The International Alliance of ALS/MND Associations National Alliance for Caregiving Elizabeth Dole Foundation

Our graphic novel is continuing to travel around the world! With the help of Associazione Italiana Sclerosi Laterale Amiotrofica, our graphic novel has now been translated into Italian. Having resources in more languages allows fewer barriers to care for young caregivers living around the world. ALS is a global illness and so we aspire to have global resources. We are so thankful to our many partners helping us serve those living with ALS/MND. Let us know what language you want to see our books in next! AISLA APS LUKi & the Lights

LUKi & the Lights was invited to the Amsterdam City Swim to serve as Wave Hero of the Junior Swim for the second time! Since 2012, more than 20,000 people have swum the Amsterdam City Swim: a unique swimming event through Amsterdam's canals, with the aim of raising funds for more scientific research into ALS. This weekend we were able to tell more families about LUKi & the Lights and Global Neuro Ycare's educational materials. A beautiful day, full of people living with ALS and those who support them. Thank you Amsterdam!

Many teenagers have been able to read and benefit from our book The ALS Experience: It's Different and Hard. It follows several teens real experiences talking to their friends and family about ALS/MND. This book has been translated into Spanish thanks to our partnership with ALS Colombia and the Asociación Colombiana de ELA. ALS or la esclerosis lateral amiotrófica (ELA) affects people regardless of what language they speak so we want to provide resources for families living with ALS/MND in their native tongue. This is why we work so hard to offer our books in many different languages. Thank you to all of our wonderful partners that help us care of our families GLOBALLY living with MND, ALS, and ELA. To find out how you can help us create more resources for children, youth, and families- go to www.globalneuroycare.org ACELA Global Neuro YCare

Same Date, different State! LUKi & the Lights is not only playing in Portland but will also play in Alabama on Aug 24th! LUKI's visiting the Magic City ?? Birmingham, Alabama—for the Sidewalk Film Festival! ?? Sidewalk is recognized by MovieMaker Magazine as one of the Top 25 Festivals in the World. ?? Date: Saturday, August 24, 2024 ?? Time: 3:00 - 4:40 PM CDT ?? Location: ASFA Recital Hall Enjoy the great lineup of animated films! ??? Check out the full schedule at sidewalkfest.com/sched For more information about LUKi & the Lights, please visit: www.globalneuroycare.org ?????? Global Neuro YCare, Big Grin Productions, The ALS Association #BirmighamAlabama #lukiandthelights #ALS #MND #ShinelightonALS

Our YCare program is expanding to help veteran families! Through partnering with the Wounded Warrior Project and Elizabeth Dole Foundation, YCare has been adapted for youth in military or veteran families who have spinal cord injuries (SCI) and traumatic brain injuries (TBI). 18 youth, ages 10 - 17, learned from professionals trained in the YCare model. These practitioners all work with the Washington DC veterans Association and the Department of Defense medical centers. These teens learned about SCI/TBI, basic care skills, understanding hyperarousal in PTSD, and managing relationships with others. We are so grateful for these amazing partnerships, which give us the opportunity to continue building and sharing YCare with young carers/hidden helpers across illness and injury. Wounded Warrior Project Elizabeth Dole Foundation Global Neuro YCare