Neuro Connect Summit

05/07/2019

Some of our 2019 in front of the Capitol Building before heading to their meetings!

THANK YOU for bringing your voice to our government on behalf of the millions affected by , , , , and more. Advocating for the reauthorization of an incredibly important program: the Patient-Centered Outcomes Research Institute - PCORI.

You are all superheroes!

Bobby Jones Chiari & Syringomyelia Foundation - Bobby Jones CSF Dysautonomia Support Network The Ehlers-Danlos Society

05/06/2019

Standing Up to POTS was proud to participate in the NeuroConnect Summit this weekend in Washington, D.C. Dr. Cathy Pederson, founder of Standing Up to POTS, presented on "The Impact of Chronic Illness on Family Dynamics." A special thank you to the Dysautonomia Support Network for welcoming us to the conference. A great time was had by all!

05/04/2019

T-minus one hour until check-in opens!

Follow along using Twitter today and tomorrow with the hashtags and . You can add your take on what's being discussed, engage with meeting attendees and follow along with any of the fun!

What's on the agenda? See here: http://ow.ly/zlfO30oDoCf

05/02/2019

Oh, hey! Just two days until !

What are you most excited to learn?

04/29/2019

FINAL HOURS TO REGISTER!

Registration for Neuro Connect Summit 2019 ends tonight at MIDNIGHT. You can still inquire about the 2019 Advocacy Day (Monday, only). Visit https://neuroconnectsummit.org before registration closes!

04/26/2019

Time's almost up to get your tickets to ! Visit https://neuroconnectsummit.org to learn about this weekend's events and register before Sunday.

If you'd still like to join us at the 2019 Day, contact any of the members: Dysautonomia Support Network, Bobby Jones Chiari & Syringomyelia Foundation - Bobby Jones CSF, The Ehlers-Danlos Society.

04/23/2019

Register now to reserve your spot before registration closes soon! Got a question? Feel free to reach out.

View full agenda, speakers, and get more information about the 2019 advocacy day on Capitol Hill and how YOU can be a part of it on our website: https://neuroconnectsummit.org/

04/20/2019

We look forward to seeing you all 2 weeks from today!

MobilityWorks offers 14 tips for those travelling with disabilities.
http://ow.ly/vaVj30oo4vu

Thanks to the Air Carrier Access Act and stricter rules to remove obstacles, flying has become easier for people with disabilities.

04/19/2019

The countdown begins... RIGHT NOW!

Two weeks until . The full agenda is up, lots of great details are being added about our policy positions, and new info is going up daily! Visit our website to learn more and reserve your spot: https://neuroconnectsummit.org/

04/19/2019

Join 30 of the countries leading experts and advocates for a weekend of learning about Chiari Malformation, Syringomyelia, Tethered Cord Syndrome, Ehlers-Danlos Syndrome, Dysautonomia, POTS and more May 4th-6th in Rockville, MD. Storm the hill with us Monday, May 6th as we unite@the hill for a lobby day in Washington DC! Reserve your seat today. This event will sell out!

FEATURED SPEAKERS
Fraser Henderson MD
Hassan Abdallah MD
Pradeep Chopra MD
Richard McCallum MD
Petra Klinge Neurosurgery MD
Svetlana Blitshteyn MD
Cathryne Maciolek PsyD
John Heiss MD
Sarah Merritt MD
Mark Luciano MD
Patricia Meegan DPT
Michael Healy DPT
Joanna Behm OTR
Kerry Devlin MMT
Jim Cavan CEO
Kathleen Kane Esq
Jonathan Rodis
Dorothy Poppe
Lara Bloom
Amanda Aikulola LPN
Adrienne Burroughs MHS
Michelle Williams SLP
Jane Taft
Lynn Julian
Cathy Poznik
Kendra Myles
Canine Partners For Life
Leslie Wuenstel RN
Antonio Maltese
Taylor Kane

Dysautonomia Support Network The Ehlers-Danlos Society Bobby Jones Chiari & Syringomyelia Foundation - Bobby Jones CSF Standing Up to POTS EDS Wellness Canine Partners for Life Healy Physical Therapy & Sports Medicine, Inc. Dysautonomia Clinic