Cure VCP Disease

Join us for the A New Hope | Well-Being in Rare: Kickoff & Community Connect - an interactive session designed to introduce you to a supportive community of young adults while exploring what this program has to offer! When: Tuesday, April 8 | 8PM ET Who: VCP disease family members ages 18-29 year old Register at: https://lnkd.in/gzBJjhtr This event will be a casual, welcoming space where you can: -Get an inside look at upcoming webinars, monthly peer support groups, and special events tailored for young adults. -Help shape the program by completing a short, real-time survey on the topics and concerns that matter most to you. -Connect with others who understand what it’s like to navigate VCP disease as a young adult. Whether you’re eager to dive into the program or just want to learn more, we’d love for you to join us! #CureVCPDisease #VCPdisease #ibmpfd

VCP is an evolutionarily conserved multifunctional protein. Dysfunctional forms of VCP can cause a diverse spectrum of diseases and disorders.?For example, VCP mutations may cause Multisystem Proteinopathy 1 (VCP-MSP).?This podcast, featuring a scientific review article published by Siwei Chu, Xinyi Xie, Carla Payan and Ursula Stochaj, members of the Stochaj lab in the Department of Physiology at McGill University, provides an overview of the roles valosin-containing protein (VCP) plays in the physiology of neurons and other cells. It also discusses the current state of research and knowledge gaps that need to be addressed in future studies. ? The podcast was developed by Nathan Peck, in his capacity as patient & CEO of Cure VCP Disease and it is suitable for a wide audience, including the general public, patients suffering from rare neurodegenerative diseases, clinicians, and researchers interested in fundamental aspects of cell biology. ? Read the review article https://lnkd.in/eCUe4VQs Listen to the full episode https://lnkd.in/euN6Vj6t

Mark your calendars- we're going on the road! First stop: Nashville, TN | April 25-26 Next Stop: Westminster, CO | June 13-15 Join the VCP Biobank to advance our understanding of VCP disease - your participation could help researchers develop biomarkers and bring us closer to potential therapies for every affected family. Complete the interest form to sign up or to be contacted by our team to answer any questions. Interest form: https://lnkd.in/g4NxFzvW #CureVCPDisease #VCPDisease #ibmpfd

Reminder! Join us tomorrow for the Genetic Counseling Webinar. If interested, register here: https://lnkd.in/g3HGhKm3

We are excited to announce the newest members of TRAIN! These outstanding organizations have demonstrated their commitment to collaboration, research effectiveness, and a steadfast dedication to patient-centeredness. Please join us in welcoming the newest TRAIN members: CACNA1A Foundation Celiac Disease Foundation Chelsea's Hope Lafora Children Research Fund CSNK2A1 Foundation Cure VCP Disease cureCADASIL PACS1 Syndrome Research Foundation PFIC Network PSC PARTNERS SEEKING A CURE Raymond A. Wood Foundation | Support for Hypothalamic Pituitary Brain Tumor Survivors and Caregivers Smith-Kingsmore Syndrome Foundation Tatton Brown Rahman Syndrome (TBRS) Community Inc. Team Telomere SCN2A- The FamilieSCN2A Foundation The Stiff Person Syndrome Research Foundation The TBCK Foundation YWHAG Research Foundation

We're on Spotify! Last month we launched a Cure VCP Disease Research Podcast where we use AI to break down important research articles into an accessible podcast. Not only are they available on our YouTube channel, but we've added them to Spotify too! Make sure to follow us to get notified when we add new episodes! https://lnkd.in/gb3rrb52 You can also find them on our media page here: https://lnkd.in/g4TV4NEr

We're sharing what we've been up to and what's next in our newest video report from Cure VCP Disease CEO, Nathan Peck! Watch here or on our YouTube Channel. https://lnkd.in/g6j6rj-F #CureVCPDisease #VCPdisease #ibmpfd

We're excited to announce our collaboration with InformedDNA to provide expert genetic counseling services for everyone in the VCP disease community! We will be hosting a webinar on Thursday, March 13 to review the program as well as answer your questions about genetic counseling and testing. If interested, please register at: https://lnkd.in/g3HGhKm3 To read more about the partnership, visit our newest post on the blog here: https://lnkd.in/gNfnNq2W #CureVCPDisease #VCPdisease #ibmpfd #geneticcounseling #raredisease

We are delighted to welcome Jordi Diaz-Manera to Cure VCP Disease’s Medical Advisory Board! Dr. Diaz-Manera is a Professor of Neuromuscular Disorders at the John Walton Muscular Dystrophy Research Center, Newcastle University (UK). Read more about Dr. Diaz-Manera and a little about our Medical Advisory Board on our newest blog post here: https://lnkd.in/gfcrGDmB

Happy Rare Disease Week! This week will raise awareness and bring hope for families affected by rare diseases. Cure VCP Disease has exciting news for this Rare Disease Week. We are launching our newest program, A New Hope | Well-Being in Rare, where we will be offering access to genetic counseling and testing, educational programs, and mental health support for young adults, made possible through a grant from the Alexion Charitable Foundation. To read more about the program and how to get involved, read more here: https://lnkd.in/gB_hy5Hc