KIF1A.ORG
@KIF1A
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We connect families affected by KIF1A and relentlessly work to accelerate research. We need to find treatment for this rare neurodegenerative disease. Fast.
Global
Joined January 2017
2025 KAND Conference Presentations & Slides Now Available! Conference recordings and presentation materials can now be accessed through our website or YouTube channel. Don’t miss the Highlight Video featured at the top of the page—a chance to relive the inspiring moments of our
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*Turn sound on* ✨2025 KAND Conference Highlight Video✨ We’re still buzzing from an incredible weekend together! 💙 Here’s a look at some of the unforgettable moments from the 2025 KAND Conference. Full presentations will be released later today or tomorrow—so check our
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https://t.co/OqWlrLqruQ 💥Medicaid and Lifesaving Waiver Programs Are Under Threat A new bill backed by Trump proposes massive cuts to Medicaid funding—putting essential care and services for millions of families, including ours, at risk. ✅Take 2 minutes to make your voice
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The first KAND-focused speech and communication study: led by Professor Angela Morgan and Lottie Morison at @MCRI_for_kids, joined by Dr. Wendy Chung, https://t.co/9vfCzWLXGE's Dylan Verden, and 44 KAND families! https://t.co/ViBFoCe9nF
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🌟 Today, on KIF1A Day, we celebrate the incredible progress our community is making — and the people who are helping to lead the way. At https://t.co/9vfCzWMvwc, we are honored to work alongside a remarkable network of researchers, scientists, and clinicians who are dedicated
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🧬Today, on KIF1A Day, we want to extend our heartfelt gratitude to @n_lorem for bringing hope to the KIF1A community. n-Lorem’s commitment to developing individualized RNA-based therapies for patients with ultra-rare genetic diseases is truly life-changing. Their innovative
We're proud to recognize all individuals living with KIF1A-Associated Neurological Disorder (KAND)! To learn about KAND and their superheroes, visit https://t.co/xscrYSMgpN
@KIF1A
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“We must ensure patients suffering from rare and chronic diseases have access to lifesaving medications for years to come, By incentivizing innovation in breakthrough treatments, the MINI Act is a win for patients, a win for breakthrough scientific research, and a win for common
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For the 30 million Americans living with one or more rare diseases, steady federal support for robust biomedical research and stability at national public health agencies are essential to advancing lifesaving research and public health initiatives. This weekend's removal of key
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Our Research Network member, MCRI's Dr. Simran Kaur, leads critical research into KIF1A/KAND, with goals in the short, medium and long-term to provide treatment options and ultimately work towards a cure. Learn more about how this research provides hope for families who are
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✨ UPDATE! ✨ We are absolutely blown away by the outpouring of support and love for our community! Thanks to your incredible generosity, we’ve raised an amazing $25,916, including matching contributions! Your kindness and dedication are truly inspiring. THANK YOU for standing
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✨ Today is Giving Tuesday!✨ Thanks to your incredible generosity across all donation platforms so far, we’ve raised over $13,000, including matching contributions! THANK YOU SO MUCH! 💙🎉 Please continue to share and donate so we can reach our goal of $30,000 and keep our
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We're kicking off Giving Tuesday for https://t.co/9vfCzWMvwc!
https://t.co/V8r5KZ00EK Join us as we raise money to keep our urgent mission alive!
kif1a.org
KIF1A.ORG is dedicated to improving the lives of those affected by KIF1A Associated Neurological Disorder and accelerating research to find a cure.
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Happy Thanksgiving, KAND Family! Today, we want to take a moment to share how truly grateful we are for each of you. Together, we’ve built an incredible support network filled with love, strength, and hope. Through the challenges, you remind us of the power of community and
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Congratulations to @WendyKChung and her amazing team on this well-deserved award! No one is more deserving of this recognition. Your relentless pursuit of answers and solutions for our nano-rare community has made a profound impact. We are incredibly grateful for your team's
Global Genes is pleased to announce the winners of our 2024 RARE Champions of Hope! See below to read more about each individual and their background. Thank you for all of your incredible work in the rare disease community! 🏆✨️ #WeekInRARE #COH
https://t.co/Kzb2HeCjUY
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Honored to accept the 2024 RARE Champion of Hope in Health Equity award. Recognition that celebrates those making a sig impact in overcoming systemic & organizational challenges contributing to inequities in the rare disease community. It is a tribute to the many who work with me
Global Genes is pleased to announce the winners of our 2024 RARE Champions of Hope! See below to read more about each individual and their background. Thank you for all of your incredible work in the rare disease community! 🏆✨️ #WeekInRARE #COH
https://t.co/Kzb2HeCjUY
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We are incredibly grateful for the partnership and the relentless work being done for KAND at Australia's @MCRI_for_kids ! Their annual report highlights the efforts led by Dr Simran Kaur, a longstanding member of the https://t.co/9vfCzWMvwc Research Network and a passionate
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✨Canadian KAND patient, Hendrik, is featured in a news article from Yahoo!Life. Take a look~ https://t.co/mI2YDMa9hE
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✨ Exciting News! ✨ We are thrilled to announce the publication of the **first-ever KAND ASO study**! This groundbreaking research marks a significant milestone in the fight against KAND, and it would not have been possible without the incredible collaboration and dedication of
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