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Blokirali ste korisnika/cu @Wishes4Elliott
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My son has
#epilepsy and#DEEs, lives with 7+#PreExistingConditions, takes 15 drugs, requires 24hr monitoring, uses 6 machines to keep him alive. The#SOTU2020 for the medically complex and disabled is scary. It's time to#dropthelawsuit to dismantle#ACA and#ProtectOurCare!https://twitter.com/LittleLobbyists/status/1224770752098054149 …
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Same. After many videos though, sadly.https://twitter.com/rachel71664085/status/1224076304083013635 …
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Wishes for Elliott - Advancing SCN8A Research proslijedio/la je Tweet
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?
Prikaži ovu nitHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Wishes for Elliott - Advancing SCN8A Research proslijedio/la je Tweet
Recordings available for 2019 webinars to increase understanding among neuroscience nurses about epilepsy, seizure emergencies, comorbidities, & sudden unexpected death in epilepsy (
#SUDEP). To receive CE credits, watch through@NeuroNursesAANN:https://bit.ly/2K3JUniHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Wishes for Elliott - Advancing SCN8A Research proslijedio/la je Tweet
“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
#disabled enough. I’m too young.” https://buff.ly/2TY7EPe#disability#chronicpain#invisibleillnessHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Wishes for Elliott - Advancing SCN8A Research proslijedio/la je Tweet
#SCN2A 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: https://www.scn2a.org/programs.html pic.twitter.com/WkBd6vfmog
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Getting appropriate and quality healthcare should not leave families at risk of
#bankruptcy.#ProtectOurCare#HealthcareIsAHumanRighthttps://twitter.com/BeAHeroTeam/status/1223763209410240520 …
0:30Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Love this ad and it's message. We need to reconsider our
#priorities. While I admire and celebrate the incredible skill of athletes and actors, the scientists and researchers trying to save the lives of our#rare kids are my heroes. How about you?https://twitter.com/RarePOV/status/1223978697801240576 …Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Can't be there in person but looking forward to tuning in for the livestream! Woohoo for
#Data!#rarediseasehttps://twitter.com/GlobalGenes/status/1223720230217711617 …Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Wishes for Elliott - Advancing SCN8A Research proslijedio/la je Tweet
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.pic.twitter.com/C9Td6JUt1e
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Wishes for Elliott - Advancing SCN8A Research proslijedio/la je Tweet
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. https://www.childneurologyfoundation.org/wp-content/uploads/2019/11/CNF-Epilepsy-Surgery-Booklet.pdf …pic.twitter.com/FMDnHRKNMr
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Do this NOW please..These cuts are punishing to people living with disabilities!!https://twitter.com/LittleLobbyists/status/1223258745280585728 …
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We'll see you ALL there, we hope!https://twitter.com/RareAdvocates/status/1223324765399719940 …
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This is fantastic news. Congrats!https://twitter.com/curedravet/status/1223263834116435968 …
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Wishes for Elliott - Advancing SCN8A Research proslijedio/la je Tweet
The
@US_FDA is hosting a#RareDiseaseDay Public Meeting: Supporting the Future of#RareDisease Product Development on 2/24! Share your perspective on challenges in rare disease product development & help the#FDA identify commonalities & solutions. More:https://bit.ly/36M1gxwHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Wishes for Elliott - Advancing SCN8A Research proslijedio/la je Tweet
Learn the ins and outs of
#EEGs on#EpilepsyDay! From initial diagnosis to surgical evaluation, EEGs are vital to patient experience and treatment. Register here:https://www.cureepilepsy.org/event_type/the-abcs-of-eegs-an-evolving-tool-for-epilepsy-diagnosis/ …Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Wishes for Elliott - Advancing SCN8A Research proslijedio/la je Tweet
Thank you
@TracyDixonSalaz for the webinar yesterday on#DEEs! 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:https://www.deepconnections.net/what-are-deesPrikaži ovu nitHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Wishes for Elliott - Advancing SCN8A Research proslijedio/la je Tweet
Today is the day! There's still time to register for our first webinar on
#DEEs and more about the@DEE_Pconnection initiative coming up at 2PM ET. Please RT! https://tinyurl.com/DEEOverview pic.twitter.com/kI8tIuDcI5
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Wishes for Elliott - Advancing SCN8A Research proslijedio/la je Tweet
Yes, we must talk about it! We also need doctors to start these conversations with us as well!
#SUDEP is a growing crisis for many with#DEEs.https://twitter.com/curedravet/status/1222237491979345920 …Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
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