Chelsea's Hope Lafora Children Research Fund

📰 New post! Ionis Pharmaceuticals, Inc. has agreed to license the ION283 program to Noventia Pharma, who will assume responsibility for developing the program. Read now on our news page: https://lnkd.in/egw-fXK9 #FightLafora

The Lafora Disease Registry is based at the University Hospital Fundación Jiménez Dias in Madrid, Spain, where Dr. Serratosa heads the lab. He has investigated this disease since 1995 and created a dynamic database. It's free for families to join and complete by teleconference. There are 30-minute follow-up visits every six months. 🔬 The Lafora Disease Registry aims to have a database of living patients with Lafora disease, know their symptoms, stage, and prepare for future clinical trials. It is so important for our community to have an updated list when industry partners are interested in drug development for Lafora disease. Please get in touch with the Lafora Disease Registry at [email protected] or learn more here: https://lnkd.in/gNSwWkVN #ChelseasHopeLaforaCure #LaforaDisease #RareDisease #ChelseasHope #FightLafora #LaforaRegistry

📢 Reminder: August family support groups tomorrow! Join Chelsea's Hope team members in a casual Zoom to connect, share, and support each other. 🗓 When? August 27, 2024, 01:00 PM PDT / August 28 at 6 AM AEST (hosted by Niki and Jenifer) AND August 27, 2024, 06:00 PM PDT / August 28 at 11 AM AEST (hosted by Niki and Mariah) 📌 Where? Zoom! Save this link to join the meeting: https://lnkd.in/eveSB_KB All Lafora family members aged 16+ are welcome to join! We will use Zoom’s close caption translation feature. We would love to see you there. #ChelseasHopeLaforaCure #LaforaDisease #RareDiseaseAwareness #ChelseasHope #RareDisease #PatientCommunity #FightLafora #RareFamilies #LaforaDiseaseFamilies #LDSupportGroup

Are you signed up for our email list? You won't want to miss the August newsletter, which is coming next week. 📧 Our monthly newsletter is the best way to keep up with Chelsea's Hope and what's happening in the Lafora disease community. From events to resources for families, we've got you covered. This year, we added an "email preferences" section for those who want more regular emails from us. 🆕 Chelsea's Hope recently changed our newsletter system! If you want to join or double-check your preferences, fill out your info here: https://lnkd.in/eCVAZBMy Happy to answer any questions! #ChelseasHope #LaforaDisease #Newsletter

Happy #NationalNonprofitDay from the team at Chelsea's Hope! Today has felt extra special because we are still celebrating the anticipated ION283 Safety Study. Will you give to support it? Donate today: https://lnkd.in/e8DnAGC9 ASSOCIATION FRANCE LAFORA and TempoZero are also fundraising! Check out their pages for their links. Thank you from all of us for your continued dedication! Together, we #FightLafora.

#breakingnews the Lafora community around the world just heard news that the first safety study was approved by the FDA. This gives our children the opportunity to live and not die so young. Please help me raise awareness and fundraise to give kids the opportunity. Chelsea's Hope Lafora Children Research Fund https://lnkd.in/g-e5ax7d #donate #fundraise #laforadiseaseawareness #childhooddementia #terminaldisease #rarediseaseawareness ASSOCIATION FRANCE LAFORA Epilepsy Foundation EveryLife Foundation for Rare Diseases

📰 New post! ION283 Safety Study Approval Read now on our news & blog page: https://lnkd.in/dzWTqeAN #FightLafora

Big thanks to our dedicated volunteers and interns, who recently simplified Lafora disease research publications for us. Check out the latest additions on our Resources page—they make science more accessible for all! Some of the new resources include: 🔬 Glycogen 101 🧬 Intro to Laforin & Malin 🐁 Summary of "Beneficial Effect of Fingolimod in a Lafora Disease Mouse Model" 🧑🔬 Summary of "Role of Astrocytes in the Pathophysiology of Lafora Disease and Other Glycogen Storage Disorders" ...and more research simplifications that you can access here: https://lnkd.in/dQPUYjyh #LaforaDisease #FightLafora #ChelseasHope #LaforaResearch #Resources

Register for the VIRTUAL #BiomarkersWorkshop 🔬 Join us for an insightful virtual workshop on biomarkers tailored for families, researchers, and clinicians. This is a unique opportunity to deepen your understanding of Lafora biomarkers and ask experts your questions. 🗓 August 19th Schedule: 🕗 8 AM PT - Session 1: What are Biomarkers? And Why Do We Need Them? 🕥 10:30 AM PT - Session 2: Intro to Biomarkers for #LaforaDisease (including preliminary data from the Natural History Study!) 🔗 We'll send you the Zoom link and agenda a week before the event. AI-Generated Closed Caption Translation will be available through Zoom. Don’t miss out on this chance to learn and connect! ➡️ Register here:

🎨 Calling all graphic designers! As part of our upcoming Awareness Campaign, we're thrilled to announce a t-shirt design contest! Submit your designs by August 12th for a chance to be featured. Our Board of Directors will choose the winning design on August 13th. Keep reading for more details... This year, Chelsea’s Hope is celebrating 15 years as a patient advocacy organization dedicated to improving the lives of those affected by Lafora disease and accelerating the development of treatments. Our 2024 Awareness Campaign aims to spread awareness about Lafora disease and raise funds for the ION283 Safety Study. What are the shirts for? Our community can wear these shirts to feel connected and raise awareness about Lafora disease. Profits from t-shirt sales will support our mission, and we will also send them to fundraisers during our awareness campaign. 🏆 Prize for the winner: A free t-shirt featuring your winning design! 📌 Submit your designs and read the contest guidelines here: https://lnkd.in/ea7cvf8j We can't wait to see your creativity! #TShirtDesignContest #GraphicDesign #LaforaDisease #FightLafora #ChelseasHope