Dysautonomia International hosted a Congressional Briefing on POTS on October 19, 2017. Speakers included three of our board members: Lauren Stiles, Dysautonomia International President, Dr. Glen Cook from Naval Medical Center Portsmouth, and Dr. Jeffrey Boris from Children Hospital of Philadelphia.
Thanks to a grassroots effort that involved many Dysautonomia International volunteers, 85 Congressional staffers participated in the briefing, as well as senior staffers from the National Institutes of Health and Department of Defense. We were told this is a wonderful turnout for a first-time briefing, especially for a medical condition that most people haven’t heard of. A list of Congressional offices that participated is included below.
If any of your House or Senate members are listed, please send them an email, call or tweet thanking their staff for participating in the October 19th POTS briefing, and let them know why this is important to your family. You can find their phone numbers here and their Twitter handles here. If you are emailing or tweeting, consider sending them a link to learn more, either our POTS page (www.dysautonomiainternational.org/POTS) or our “What is POTS?” video (https://vimeo.com/187404694).
Lauren gave the patient perspective and reviewed the unfortunate lack of NIH funding that is spent on POTS research, Dr. Cook reviewed the basics of POTS, and Dr. Boris provided a brief overview of quality of life, epidemiology and co-morbidity data on POTS. Our goal was not to teach them everything about POTS, but rather to tell them it exists, it’s serious, there is a huge patient community dealing with this, and it requires more federal resources.
The feedback from the audience after the briefing was great. Three Congressional staffers let us know that they had POTS (three cheers for POTSies getting awesome jobs on Capitol Hill!), and two other staffers let us know they had children with POTS. Another staffer told us he was headed to medical school and would be sure to be on the lookout for POTS patients. Even those who had no personal connection to POTS were very supportive of our efforts and they offered to meet with us to follow up on specific action items.
Special thanks to our bi-partisan Congressional Briefing Co-Sponsors!
Senator Roy Blunt (R-MO)
Senator Patty Murray (D-WA)
Representative Brian Fitzpatrick (R-PA)
Representative Seth Moulton (D-MA)
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Congressional Offices In Attendance By State
Office of Representative Bradley Byrne
Office of Representative Martha McSally
Office of Representative David Schneikert
Office of Senator Dianne Feinstein
Office of Representative Juan Vargas
Office of Representative David Valadao
Office of Representative Raul Ruiz
Office of Representative Susan Davis
Office of Representative Pete Aguilar
Office of Representative Ted Lieu
Office of Senator Cory Gardner
Office of Senator Michael Bennet
Office of Senator Blumenthal
Office of Senator Christopher Coons
Office of Representative Lisa Blunt-Rochester
Office of Senator Bill Nelson
Office of Representative Kathy Castor
Office of Representative Matt Gaetz
Office of Representative Ron Dejantis
Office of Senator David Purdue
Office of Senator Dick Durbin
Office of Senator Joe Donnelly
Office of Senator Jerry Moran
Office of Representative Ron Estes
Office of Representative Lynn Jenkins
Office of Senator Elizabeth Warren
Office of Senator Chris VanHolland
Office of Representative John Delaney
Office of Representative Andy Harris
Office of Senator Ed Markey
Office of Representative Seth Moulton
Office of Senator Roy Blunt
Office of Senator Deb Fischer
Office of Representative Don Bacon
Office of Senator Jeanne Shaheen
Office of Senator Bob Menendez
Office of Senator Chuck Schumer
Office of Representative Paul Tonko
Office of Representative Grace Meng
Office of Representative Lee Zeldin
Office of Senator Bob Casey, Jr.
Office of Representative Brian Fitzpatrick
Office of Representative Jennifer Gonzales-Colon
Office of Senator John Thune
Office of Representative Kevin Brady
Office of Representative Ted Poe
Office of Senator Tim Kaine
Office of Senator Patty Murray
Office of Senator Maria Cantwell
Office of Senator John Barruseo