Neuro Connect Summit 2019

The official Twitter account for the Neuro Connect Summit that will be held in Rockville, MD on May 4-5, 2019. #NCSummit19 #neuroconnect

[Neuro Connect Summit 2019 @NCSummit19]

We're still reeling from #NCSummit19... we'll have more to share in the coming weeks! Stay tuned! Thanks again to all involved! #neuroconnect

[Bobby Jones Chiari & Syringomyelia Foundation @bobbyjonescsf]

Thanks to Miss Tupelo 2019 for joining us at
@NCSummit19 & this year's #uniteatthehill! A #ChiariWarrior herself, she bravely used her platform to raise #awareness for #Chiari & rare disorders. She provided a voice for millions! #advocacymatters #MissAmericaOrganization

[Neuro Connect Summit 2019 @NCSummit19]

Thanks to @PopSuperhero for sharing her inspirational story ✊❤️ and providing patients who may be struggling with the power to #cope. 🧠🦓💪#NCSummit19 #neuroconnect

[Lynn Julian @lynnjulian007]

Still Catching my breath
returning from speaking at #NCsummit19 🧠 🦓🤓
So much new info to share!

#lynnjulian #patientAdvocate
#dysautonomia #pots #EDS
#speaker #author #EhlersDanlos
#EhlersDanlosSyndrome
#mastcell #MCAD
#TBI #TBIgirl #braininjury
#Lyme #LymeDisease #LymeLynn

[EDS Northwest @EDSNW]

@NCSummit19 @bobbyjonescsf @TheEDSociety @DysSupport 🦓❤️🙌🏻❤️🦓 Yay! Thank you all for your hard work and #PatientAdvocacy #EDSAdvocacy #POTSAdvocacy #GastroparesisAdvocacy from those of us who physically couldn’t attend; we’re so grateful for your voices. ❤️🦓❤️ #ZebrasDazzleTogether #EDSZebraFamily #OnlyRarelyDiagnosed

[Neuro Connect Summit 2019 @NCSummit19]

Hey, Capitol Hill! We have arrived! #uniteatthehill #NCSummit19 #neuroconnect @bobbyjonescsf @TheEDSociety @DysSupport

[Bobby Jones Chiari & Syringomyelia Foundation @bobbyjonescsf]

Sooooo.. THANK YOU to @PCORI for leading the way and helping us put the patient and family first. Today, we are storming Capitol Hill to personally ask our Congresspersons to reauthorize this important work in 2020 and beyond!!!

#uniteatthehill #advocacy (13/13)

[Bobby Jones Chiari & Syringomyelia Foundation @bobbyjonescsf]

But most importantly, #PCORI is the national leader shifting the entire #healthcare sector towards the patient. And being #patientcentered is the ONLY way to research and properly treat #chronicillness.

#uniteatthehill (12/?)

[Bobby Jones Chiari & Syringomyelia Foundation @bobbyjonescsf]

The issues of #chronicpain and #opioids are priority research areas at #PCORI... and this is an area that severely affects patients and families struggling with #Chiari, #syringomyelia, #EDS, #dysautonomia and other disorders.

#uniteatthehill (11/?)

[Bobby Jones Chiari & Syringomyelia Foundation @bobbyjonescsf]

They’ve built a huge network of patient- and clinician-run databases to harness more big data and to promote data sharing for faster answers to big questions! This network is @PCORnetwork!

#PCORI #uniteatthehill (10/?)

[Bobby Jones Chiari & Syringomyelia Foundation @bobbyjonescsf]

#PCORI is innovating the way research is done in other ways, too, beyond prioritizing #patientcenteredness.

#uniteatthehill (9/?)

[Bobby Jones Chiari & Syringomyelia Foundation @bobbyjonescsf]

...#PCORI also funded a $2.8M comparative effectiveness study to benefit children affected by #Chiari and #syringomyelia whose lead investigator is CSF medical board member, Dr. David Limbrick!

#uniteatthehill (8/?)

[Bobby Jones Chiari & Syringomyelia Foundation @bobbyjonescsf]

... #PCORI funded a $50,000 grant for an #EhlersDanlos Co-Morbidity Consortium and...

#uniteatthehill (7/?)

[Bobby Jones Chiari & Syringomyelia Foundation @bobbyjonescsf]

#PCORI has already funded research that directly addresses our conditions, which usually go understudied from other research bodies...

#uniteatthehill (6/?)

[Bobby Jones Chiari & Syringomyelia Foundation @bobbyjonescsf]

#PCORI is funding research that MATTERS to patients and families affected by chronic illness. They’ve funded over $2B in comparative effectiveness research in the few short years they’ve been around!

#uniteatthehill (5/?)

[Bobby Jones Chiari & Syringomyelia Foundation @bobbyjonescsf]

#PCORI puts patients and caregivers first in research. They understand that no one knows a condition better than the people who are affected by it every single day.

#uniteatthehill (4/?)

[Bobby Jones Chiari & Syringomyelia Foundation @bobbyjonescsf]

In 2016, the Government Accountability Office said that #PCORI is Meeting it’s legislative intent to incorporate #patientcenteredness into research and #healthcare.

#uniteatthehill (3/?)

[Bobby Jones Chiari & Syringomyelia Foundation @bobbyjonescsf]

#PCORI is the result of bipartisan politics— leadership on both sides of the aisle think #patientcentered care is important.

#uniteatthehill (2/?)

[Bobby Jones Chiari & Syringomyelia Foundation @bobbyjonescsf]

We are D E T E R M I N E D to get @PCORI reauthorized before Sept 30th of this year.... here’s a fun thread about WHY

[Neuro Connect Summit 2019 @NCSummit19]

We got a bus of #advocates on our way to Capitol Hill to remind our Senate and House members to reauthorize @PCORI before the deadline of Sept. 30th! #NCSummit19 #neuroconnect #PatientAdvocate

[Neuro Connect Summit 2019 @NCSummit19]

. @LaraBloomEDS is presenting on the @TheEDSociety’s work and HEDGE study. #NCSummit19 #neuroconnect