KIF1A.ORG

@KIF1A

We connect families affected by KIF1A and relentlessly work to accelerate research. We need to find treatment for this rare neurodegenerative disease. Fast.

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Vrijeme pridruživanja: siječanj 2017.

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  1. proslijedio/la je Tweet

    📢 announces $13.5M in funding to patient-led groups to drive research for forward

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  2. prije 15 sati

    Happy to kid Mikołaj, a multitalented 5-year-old who is an awesome singer & loves playing drums & piano. He's made huge progress in the last few months: learning new words, making new friends & even starting to push his walker by himself!

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    4. velj

    A new understanding of kinesin

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    4. velj

    Luke Rosen went from an up-and-coming career on Broadway to founder of a patient advocacy group and award-winning advocate for rare disease research. Rosen will give a talk called "KIF1A Superheroes" at 1:10 pm today in Life Sciences 1022. Learn more:

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  5. 4. velj

    Collaboration > competition When open science is widely embraced, believes those at the forefront can deliver life-changing & life-saving treatment options for patients faster than ever before. 

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  6. 3. velj

    Transformational news: has been selected to join the Network, powering our community to activate a collaborative network of KIF1A researchers & innovators working toward KAND treatment!

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  7. 3. velj
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  8. 3. velj

    To the 100 million people watching the tonight: Join our mission to find cures for all children battling . Watch superhero Susannah show the world how .

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  9. 2. velj
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    2. velj

    Worldwide, 100 million people will watch the . 3x that many battle every day. is proud to work with  amazing advocacy organizations like to provide hope to those families through the power of sport!

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  11. 1. velj

    This week for : New research that may not have direct relevance for KAND, but does add to our understanding of KIF1A function. Plus, new gene therapy guidance from the FDA.

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  12. 31. sij

    Happy from kid Edward! From Edward's family: "Although Edward is legally blind he has an incredible memory. His support person on the bus teaches him to count 1-10 in different languages. Edward then shares this knowledge with his family. Three languages so far..."

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  13. 29. sij

    How could KAND treatment make a meaningful difference in the daily lives of KAND patients? What matters most to KAND families? Any therapeutic that addresses these daily challenges would be transformative for our families.

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  14. 27. sij

    accelerates collaborative & translational research to rapidly discover treatment for this generation of KAND patients. We have a bold & achievable plan to make KAND treatment a reality. It's time to on .

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  15. proslijedio/la je Tweet
    25. sij

    Yesterday, I had the privilege to be a part of the offsite. As I listened I was struck by the epiphany that while our fights have many names, we are one community working to remake broken systems to see us all as people with limitless potential.

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  16. 25. sij

    It's ! This week we meet the superfamily & learn about encouraging updates in therapeutic development for rare genetic diseases. ... & , , , etc., etc.

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  17. 24. sij

    Spoiler alert: The Kinesin-3 group (which includes ) has been designated as The Flash. We just need The Flash to get with it for our KIF1A superheroes! Want to learn more about kinesins? Watch for tomorrow's post on the blog.

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  18. 24. sij

    We all know who the real superheroes are, but what if we imagined kinesin motor proteins as superheroes? Our friends at present SUPERHEROES OF THE KINESIN WORLD.

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  19. 21. sij

    Anouk shares her powerful journey from devastation to resilience after her daughter, Lhassa, was diagnosed with . Today is Lhassa’s birthday. She would have been 6. We honor her memory every day by continuing our relentless mission to find a cure.

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  20. 18. sij

    Grab some coffee, tea, or whatever helps inspire that feeling, because we have a treasure trove of scientific gems to read about this week.

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