Wishes for Elliott - Advancing SCN8A Research

@Wishes4Elliott

Wishes for Elliott is advancing research into SCN8A in order to better inform effective treatments. We also work to build support for families dealing with DEEs

Washington, DC
Vrijeme pridruživanja: lipanj 2014.

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  1. My son has and , lives with 7+ , takes 15 drugs, requires 24hr monitoring, uses 6 machines to keep him alive. The for the medically complex and disabled is scary. It's time to to dismantle and !

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  3. 2. velj

    Most of us will, at some point in time, encounter a system that is broken. Thus, the question is how will you react? Me--I want to build a movement to remake the broken system that sees me as a statistic. The question is will I have the time or will ALS take my body first?

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  4. 2. velj

    Recordings available for 2019 webinars to increase understanding among neuroscience nurses about epilepsy, seizure emergencies, comorbidities, & sudden unexpected death in epilepsy (). To receive CE credits, watch through :

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  5. 1. velj

    “I can walk but I can’t walk very far…I can stand, just not for very long… Limited as my mobility is, I’m still made to feel like a faker. I don’t look sick enough. I don’t look enough. I’m too young.”

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  6. 1. velj

    FAMILY EVENT GRANT PROGRAM is open to the GLOBAL SCN2A Community, is to intentionally bring SCN2A families together. It is our hope this will give SCN2A families to create and coordinate a SCN2A Family Event, paid for by FamilieSCN2A. Learn more at:

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  7. Getting appropriate and quality healthcare should not leave families at risk of .

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  8. Love this ad and it's message. We need to reconsider our . While I admire and celebrate the incredible skill of athletes and actors, the scientists and researchers trying to save the lives of our kids are my heroes. How about you?

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  9. Can't be there in person but looking forward to tuning in for the livestream! Woohoo for !

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  10. 31. sij

    High insurance copays caused Torrey’s family to lose their home. And she had “good” insurance. We need Medicare-for-All on the ballot in Nov. Lives like Torrey’s depend on it.

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  11. Do you have questions about epilepsy surgery? CNF recently released "Surgery for Difficult-to-Treat Epilepsy: A Step-by-Step Guide for Patients and Families" to help families understand this complex procedure.

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  12. Do this NOW please..These cuts are punishing to people living with disabilities!!

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  15. 29. sij

    The is hosting a Public Meeting: Supporting the Future of Product Development on 2/24! Share your perspective on challenges in rare disease product development & help the identify commonalities & solutions. More:

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  16. 31. sij

    Learn the ins and outs of on ! From initial diagnosis to surgical evaluation, EEGs are vital to patient experience and treatment. Register here:

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  17. 30. sij

    Thank you for the webinar yesterday on ! We're glad so many of you could join us. For those of you who were unable to, we know life doesn't always play by our schedules. You can watch and download slides at your leisure:

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  18. 29. sij

    Today is the day! There's still time to register for our first webinar on and more about the initiative coming up at 2PM ET. Please RT!

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  19. 29. sij

    Yes, we must talk about it! We also need doctors to start these conversations with us as well! is a growing crisis for many with .

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