LUKi & the Lights

LUKi here! I have a cool story about someone living with ALS to share. 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 along with my movie, LUKi & the Lights, at the link below. https://lnkd.in/g3zTVaSF

Im excited to share some big 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 Société SLA du Québec 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 ALS Quebec 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

My friend Melinda Kavanaugh, PhD, LCSW 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 my movie LUKi & the Lights, a short film about, me, a robot diagnosed with ALS who is cared for by my 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 my movie, 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 young carer in your family, we’re here to help. Our resources at Global Neuro YCare support children, youth, young adults, and families, offering guidance on how to talk about illness, understand caregiving, and find much-needed support. Check out our link below for helpful resources. https://lnkd.in/g3zTVaSF

This week Melinda Kavanaugh ran YCare in South Africa. Although the women didn’t all speak the same language, they shared common experiences of social isolation from their communities who know nothing of ALS/MND, have few supports outside the home, and even within their families. In partnership with Baragwanath hospital in Soweto, Johannesburg, she adapted the YCare program for adults. Through YCare, they learned about basic care skills adapted to their home needs, how to create communication boards, and prepare foods of differing textures to lessen chocking hazards. They sat in a group and learned about ALS/MND, dispelling misconceptions, and building connections with each other. There were many tears at the beginning, but by the end, so many smiles, hugs, and talk of how to keep them connected. We showed them my movie, LUKi and the Lights, and gave them our coloring book. They all sat in total silence, coloring, breathing, and crying. One participant stated that was the longest amount of time she had ever done something just for herself. YCare was created for children and youth, but when there are no supports, it is easily adapted to whomever needs it. We could not have done any of it without our amazing partners at the MND clinic at the Baragwanath hospital in Soweto, who helped adapt and deliver the YCare program. Global Neuro YCare was created for children, youth and FAMILIES. It is an honor to share our work with these amazing women and continue to raise awareness for ALS/MND. Global Neuro YCare LUKi & the Lights

LUKi & the Lights has been traveling the world in film festivals but I am most excited for you all to see it in your homes! Watch the LUKi & the Lights trailer now on YouTube. https://lnkd.in/gFEDM7yn @biggrinproductions The ALS Association Global Neuro YCare LUKi & the Lights #ShineALightOnALSMND #als #mnd #alsawareness

My movie trailer is now on YouTube! I am so excited that more people will get the chance to hear about Luki & the Lights. Go check out the trailer! https://lnkd.in/gGExf9a3 The ALS Association @biggrinproductions Global Neuro YCare LUKi & the Lights #ShineALightOnALSMND #als #mnd #alsawareness

I have loved seeing everyone’s reactions to my film!! Hopefully you are all enjoying my coloring book as well. Tag me in your coloring page pictures so we can share them with our community. Together we can bring more awareness to those living with ALS and MND!! The ALS Association @biggrinproductions The International Alliance of ALS/MND Associations Motor Neurone Disease (MND) Association Global Neuro YCare LUKi & the Lights #ShineALightOnALSMND #als #mnd #alsawareness

Some of my favorite humans Sascha Groen and Dr. Kavanaugh presented my film, LUKi and the Lights, at the MND Iceland meeting, honoring the International ALS/MND day! Global Neuro YCare The ALS Association @biggrinproductions LUKi & the Lights #ShineALightOnALS/MND #als #mnd #alsawareness

It is Global ALS/MND Day, and we are thrilled to share my movie, LUKi and the Lights, with all you! Go to https://lnkd.in/gx2nwUtN to watch the film!! And make sure you tag us in your posts of pictures of you watching, coloring in the coloring book, and pictures of LUKi! Global Neuro YCare The ALS Association Big Grin Productions