Top Tweets for #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
Thanks to @PopSuperhero for sharing her inspirational story ✊❤️ and providing patients who may be struggling with the power to #cope. 🧠🦓💪#NCSummit19 #neuroconnect
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
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
Hey, Capitol Hill! We have arrived! #uniteatthehill #NCSummit19 #neuroconnect @bobbyjonescsf @TheEDSociety @DysSupport
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
. @LaraBloomEDS is presenting on the @TheEDSociety’s work and HEDGE study. #NCSummit19 #neuroconnect
Visit our #advocacy room at 2pm to learn how #servicedogs can improve the lives of patients with these conditions! #NCSummit19 #neuroconnect #Chiari #dysautonomia #EhlersDanlosSyndrome #syringomyelia #chronicillness #chronicpain
Inspire's Judy Chandler with Amanda Aikulola, President and CEO of @DysSupport, an Inspire partner, today at #NCSummit19 in Rockville, MD. #neuroconnect
Patient advocate Antonio Maltese is giving an awesome presentation to better prepare our younger #advocates to help advocate in behalf of their friends. Even the youngest advocates can make a huge difference! #youthadvocacy #advocacy #NCSummit19 #neuroconnect
Dr. Richard McCallum is going to give the next two presentations in the medical room on #gastrointestinal considerations of #EhlersDanlosSyndrome, general #hypermobility, #dysautonomia and more— like #gastroparesis . #NCSummit19 #neuroconnect
Adrienne Burroughs of @NINR talks having conversations between medical providers and families about #palliativecare. Dispelling myths about #palliative care and encouraging meaningful conversations! #NCSummit19 #neuroconnect
Kendra Myles is describing her experience running #support groups and #nonprofits for anyone who may want to get more involved in the future in our #advocacy room! #NCSummit19 #neuroconnect
Dr. Svetlana Blitshteyn is talking women’s health in #dysautonomia and #chronicillness. Everything from menstruation, pregnancy, life as a caregiver, relationships and a healthy sex life. Nothing off limits! #NCSummit19 #neuroconnect
Dr. Cathryne Maciolek describes how a patient with #Chiari, #dysautonomia, #EhlersDanlosSyndrome, and other disorders can better interact and #advocate for themselves with their loved ones. So important! #NCSummit19 #neuroconnect
Our very own Amanda Aikulola at @DysSupport introduces the concept of #advocacy— with your medical providers, political representatives and even family and friends. #NCSummit19 #neuroconnect
Jon Rodis and Kathleen Kane spoke this morning on #disability law for patients with #chronicillness. #NCSummit19 #neuroconnect
Dr. Petra Klinge spoke a bit about #tetheredcord, especially “occult” #tetheredcordsyndrome. #NCSummit19 #neuroconnect
We are also low in #VitaminD on a population level. Take a supp and get some sun ☀️ — with sunscreen!! #NCSummit19
On a population level, we have very low #magnesium, which may help protect against #pain! Eat those green leafy vegetables and try topical solutions like an Epsom salt bath. #NCSummit19 #neuroconnect
On a population level, we have very low #magnesium, which may help protect against #pain! Eat those green leafy vegetables and try topical solutions like an Epsom salt bath. #NCSummit19 #neuroconnect
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