LGS Foundation

@LGS_Foundation

The LGS Foundation is dedicated to improving the lives of individuals with Lennox-Gastaut Syndrome through research and programs

New York, USA
Vrijeme pridruživanja: listopad 2009.

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  1. proslijedio/la je Tweet
    4. velj

    Knowing that if these seizures don't calm down soon they are going to kill him a mum cuddle can help after a seizure but it won't save his life just maybe cannabis will so many people need this treatment for and other types of epilepsy😞

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  2. 4. velj

    We know firsthand that involving patients is vital in the search for treatments. ’s is supporting patient communities to accelerate research and drive progress against rare disease . Thank you for supporting us!

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  3. proslijedio/la je Tweet
    4. velj
    Odgovor korisnicima i sljedećem broju korisnika:

    So amazing!!!! Congrats to all!

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  4. 3. velj

    7,000 rare diseases, one community fighting for cures!! We’re at LGSF are so proud to be part of ’s Network

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  5. proslijedio/la je Tweet
    3. velj

    This is so exciting! So thrilled to see from the community here, in addition to so many others! Thank you so much We have even more hope!

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  6. 23. pro 2019.

    December News: LGSF Conference Announcement, Clinical Trial Info, Annual Giving, and more

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  7. proslijedio/la je Tweet
    1. stu 2019.

    Today is Lennox-Gastaut Syndrome (LGS) Awareness day & held an important event on this rare & catastrophic form of epilepsy that begins in childhood. 30-50% of people w/ LGS have Infantile Spasms prior to developing LGS. Learn More Here:

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  8. proslijedio/la je Tweet
    1. stu 2019.

    Today is Lennox-Gastaut Syndrome Awareness Day! has education and awareness materials which can be downloaded for free or ordered online. Find awareness events near you & learn how to help raise awareness at

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  9. proslijedio/la je Tweet
    1. stu 2019.

    I encourage everyone to watch this meeting. I'm so proud of and all the other groups who helped make this happen.

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  10. proslijedio/la je Tweet
    1. stu 2019.

    Watching the PFDD livestream and feeling very emotional. These meetings are crucial for understanding and treatment progress. We have so much work to do in . It can and will be done by champions like .

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  11. proslijedio/la je Tweet
    1. stu 2019.

    I am watching the live feed of the patient focused drug development meeting with awe and I stand inspired by these remarkable parents! 💜💚

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  12. 1. stu 2019.

    If you'd like to share your LGS experience, we are listening. What is it like living with LGS? Email Tracy@LGSfoundtion.org

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  13. proslijedio/la je Tweet

    We are live and we are listening. Email Tracy@lgsfoundation.org with comments.

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  14. 1. stu 2019.

    If you'd like to make comments during the Meeting, please email Tracy@LGSfoundation.org

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  15. 1. stu 2019.
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  16. 1. stu 2019.

    DELVE PFDD meeting on DEEs and LGS goes live in 1 minute!

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  17. proslijedio/la je Tweet
    1. stu 2019.

    Its awareness day Lennox-gastaut syndrome is horrid it causes multiple seizures every day each one a threat to his life we are hoping the guidelines change so we can try friends have tried it and had huge improvement it could save James life😞

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  18. proslijedio/la je Tweet
    31. lis 2019.

    Many thanks to Representative Randy Weber for taking the time to meet with us today! The care and calm passion you showed for Samantha and our population was touching. Thank you for making us feel heard!

    , , i još njih 4
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  19. proslijedio/la je Tweet

    took my child’s voice. On Nov 1, we will speak on her behalf at the first patient-focused drug development () meeting for DEE/LGS. Join us. End

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  20. proslijedio/la je Tweet
    30. lis 2019.

    Thanks to for featuring for day and awareness month during this morning’s

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