{"id":702,"date":"2017-10-31T11:46:08","date_gmt":"2017-10-31T15:46:08","guid":{"rendered":"http:\/\/www.dysautonomiainternational.org\/blog\/wordpress\/?p=702"},"modified":"2017-10-31T11:46:08","modified_gmt":"2017-10-31T15:46:08","slug":"watch-the-congressional-briefing-on-pots","status":"publish","type":"post","link":"https:\/\/dysautonomiainternational.org\/blog\/wordpress\/watch-the-congressional-briefing-on-pots\/","title":{"rendered":"Watch the Congressional Briefing on POTS"},"content":{"rendered":"<p>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.<\/p>\n<p><iframe loading=\"lazy\" title=\"Congressional Briefing on POTS\" src=\"https:\/\/player.vimeo.com\/video\/240372009?dnt=1&amp;app_id=122963\" width=\"604\" height=\"340\" frameborder=\"0\" allow=\"autoplay; fullscreen; picture-in-picture; clipboard-write; encrypted-media; web-share\"><\/iframe><\/p>\n<p>Thanks to a grassroots effort that involved many Dysautonomia International volunteers, 85 Congressional\u00a0staffers 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&#8217;t heard of. A list of Congressional offices that participated is included below.<\/p>\n<p>If any of your House or Senate\u00a0members 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 <span style=\"color: #00ccff;\"><strong><a style=\"color: #00ccff;\" href=\"https:\/\/salsa4.salsalabs.com\/o\/51063\/getLocal.jsp\">here<\/a> <\/strong><\/span>and their Twitter handles <span style=\"color: #00ccff;\"><strong><a style=\"color: #00ccff;\" href=\"http:\/\/www.tweetcongress.org\/tweeters\">here<\/a><\/strong><\/span>. If you are emailing or tweeting, consider sending them a link to learn more, either our POTS page (www.dysautonomiainternational.org\/POTS) or our &#8220;What is POTS?&#8221; video (https:\/\/vimeo.com\/187404694).<\/p>\n<p>Lauren\u00a0gave the patient perspective and reviewed the\u00a0unfortunate 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&#8217;s serious, there is a huge patient community dealing with this, and it requires more federal resources.<\/p>\n<p>The feedback from the audience after the briefing was great. Three Congressional staffers let us know that they had POTS (three cheers for\u00a0POTSies getting\u00a0awesome jobs on Capitol Hill!), and two other\u00a0staffers 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.\u00a0 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.<\/p>\n<p>Special thanks to our bi-partisan Congressional Briefing Co-Sponsors!<br \/>\nSenator Roy Blunt (R-MO)<br \/>\nSenator Patty Murray (D-WA)<br \/>\nRepresentative Brian Fitzpatrick (R-PA)<br \/>\nRepresentative Seth Moulton (D-MA)<\/p>\n<p>If you would like to find out about future advocacy Action Alerts and receive our free monthly e-newsletter, sign up for our <span style=\"color: #00ccff;\"><strong><a style=\"color: #00ccff;\" href=\"http:\/\/salsa4.salsalabs.com\/o\/51063\/p\/salsa\/web\/common\/public\/signup?signup_page_KEY=9767\" target=\"_blank\">email list <\/a><\/strong><\/span>today.<\/p>\n<p><span style=\"text-decoration: underline;\">Congressional Offices In Attendance By State<\/span><br \/>\n<strong>Alabama<\/strong><br \/>\nOffice of Representative Bradley Byrne<\/p>\n<p><strong>Arizona<\/strong><br \/>\nOffice of Representative\u00a0Martha\u00a0McSally<br \/>\nOffice of Representative David Schneikert<\/p>\n<p><strong>California<br \/>\n<\/strong>Office of Senator Dianne Feinstein<strong><br \/>\n<\/strong>Office of Representative Juan Vargas<strong><br \/>\n<\/strong>Office of Representative\u00a0David Valadao<strong><br \/>\n<\/strong>Office of Representative\u00a0Raul Ruiz<strong><br \/>\n<\/strong>Office of Representative Susan Davis<br \/>\nOffice of Representative Pete Aguilar<br \/>\nOffice of Representative Ted Lieu<\/p>\n<p><strong>Colorado<\/strong><br \/>\nOffice of Senator\u00a0Cory Gardner<br \/>\nOffice of Senator Michael Bennet<\/p>\n<p><strong>Connecticut<\/strong><br \/>\nOffice of Senator\u00a0 Blumenthal<\/p>\n<p><strong>Delaware<br \/>\n<\/strong>Office of Senator Christopher Coons<br \/>\nOffice of Representative Lisa Blunt-Rochester<\/p>\n<p><strong>Florida<br \/>\n<\/strong>Office of Senator\u00a0Bill\u00a0Nelson<br \/>\nOffice of Representative\u00a0Kathy Castor<br \/>\nOffice of Representative Matt Gaetz<br \/>\nOffice of Representative Ron Dejantis<\/p>\n<p><strong>Georgia<\/strong><br \/>\nOffice of Senator David Purdue<\/p>\n<p><strong>Illinois<\/strong><br \/>\nOffice of Senator Dick Durbin<\/p>\n<p><strong>Indiana<\/strong><br \/>\nOffice of Senator Joe Donnelly<\/p>\n<p><strong>Kansas<br \/>\n<\/strong>Office of Senator Jerry Moran<br \/>\nOffice of Representative Ron Estes<br \/>\nOffice of Representative Lynn Jenkins<\/p>\n<p><strong>Maryland<br \/>\n<\/strong>Office of Senator Elizabeth Warren<br \/>\nOffice of Senator Chris VanHolland<strong><br \/>\n<\/strong>Office of Representative John Delaney<br \/>\nOffice of Representative Andy Harris<\/p>\n<p><strong>Massachusetts<br \/>\n<\/strong>Office of Senator\u00a0Ed Markey<br \/>\nOffice of Representative Seth Moulton<\/p>\n<p><strong>Missouri<br \/>\n<\/strong>Office of Senator Roy Blunt<\/p>\n<p><strong>Nebraska<\/strong><br \/>\nOffice of Senator Deb Fischer<strong><br \/>\n<\/strong>Office of Representative Don Bacon<\/p>\n<p><strong>New Hampshire<br \/>\n<\/strong>Office of Senator Jeanne Shaheen<\/p>\n<p><strong>New Jersey<\/strong><br \/>\nOffice of Senator\u00a0Bob Menendez<\/p>\n<p><strong>New York<\/strong><br \/>\nOffice of Senator Chuck Schumer<strong><br \/>\n<\/strong>Office of Representative\u00a0Paul Tonko<br \/>\nOffice of Representative Grace Meng<br \/>\nOffice of Representative Lee Zeldin<\/p>\n<p><strong>Pennsylvania<br \/>\n<\/strong>Office of Senator Bob Casey, Jr.<br \/>\nOffice of Representative Brian Fitzpatrick<\/p>\n<p><strong>Puerto Rico<\/strong><br \/>\nOffice of Representative\u00a0Jennifer Gonzales-Colon<\/p>\n<p><strong>South Dakota<\/strong><br \/>\nOffice of Senator John Thune<br \/>\n<strong><br \/>\nTexas<\/strong><br \/>\nOffice of Representative Kevin Brady<br \/>\nOffice of Representative Ted Poe<\/p>\n<p><strong>Virginia<\/strong><br \/>\nOffice of Senator Tim Kaine<\/p>\n<p><strong>Washington<\/strong><br \/>\nOffice of Senator Patty Murray<br \/>\nOffice of Senator Maria Cantwell<\/p>\n<p><strong>Wyoming<\/strong><br \/>\nOffice of Senator\u00a0John Barruseo<\/p>\n<a class=\"synved-social-button synved-social-button-follow synved-social-size-16 synved-social-resolution-single synved-social-provider-facebook nolightbox\" data-provider=\"facebook\" target=\"_blank\" rel=\"nofollow\" title=\"Follow us on Facebook\" href=\"http:\/\/www.facebook.com\/dysautonomiainternational\" style=\"font-size: 0px;width:16px;height:16px;margin:0;margin-bottom:5px;margin-right:5px\"><img loading=\"lazy\" decoding=\"async\" alt=\"Facebook\" title=\"Follow us on Facebook\" class=\"synved-share-image synved-social-image synved-social-image-follow\" width=\"16\" height=\"16\" style=\"display: inline;width:16px;height:16px;margin: 0;padding: 0;border: 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src=\"https:\/\/dysautonomiainternational.org\/blog\/wordpress\/wp-content\/plugins\/social-media-feather\/synved-social\/image\/social\/regular\/32x32\/mail.png\" \/><\/a><a class=\"synved-social-credit\" target=\"_blank\" rel=\"nofollow\" title=\"WordPress Social Media Feather\" href=\"http:\/\/synved.com\/wordpress-social-media-feather\/\" style=\"color:#444;text-decoration:none;font-size:8px;margin-left:5px;vertical-align:10px;white-space:nowrap\"><span>by <\/span><img loading=\"lazy\" decoding=\"async\" style=\"display: inline;margin:0;padding:0;width:16px;height:16px\" width=\"16\" height=\"16\" alt=\"feather\" src=\"https:\/\/dysautonomiainternational.org\/blog\/wordpress\/wp-content\/plugins\/social-media-feather\/synved-social\/image\/icon.png\" \/><\/a>","protected":false},"excerpt":{"rendered":"<p>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\u00a0staffers participated &hellip; <a href=\"https:\/\/dysautonomiainternational.org\/blog\/wordpress\/watch-the-congressional-briefing-on-pots\/\" class=\"more-link\">Continue reading <span class=\"screen-reader-text\">Watch the Congressional Briefing on POTS<\/span> <span class=\"meta-nav\">&rarr;<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1],"tags":[],"class_list":["post-702","post","type-post","status-publish","format-standard","hentry","category-uncategorized"],"_links":{"self":[{"href":"https:\/\/dysautonomiainternational.org\/blog\/wordpress\/wp-json\/wp\/v2\/posts\/702","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/dysautonomiainternational.org\/blog\/wordpress\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/dysautonomiainternational.org\/blog\/wordpress\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/dysautonomiainternational.org\/blog\/wordpress\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/dysautonomiainternational.org\/blog\/wordpress\/wp-json\/wp\/v2\/comments?post=702"}],"version-history":[{"count":9,"href":"https:\/\/dysautonomiainternational.org\/blog\/wordpress\/wp-json\/wp\/v2\/posts\/702\/revisions"}],"predecessor-version":[{"id":711,"href":"https:\/\/dysautonomiainternational.org\/blog\/wordpress\/wp-json\/wp\/v2\/posts\/702\/revisions\/711"}],"wp:attachment":[{"href":"https:\/\/dysautonomiainternational.org\/blog\/wordpress\/wp-json\/wp\/v2\/media?parent=702"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/dysautonomiainternational.org\/blog\/wordpress\/wp-json\/wp\/v2\/categories?post=702"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/dysautonomiainternational.org\/blog\/wordpress\/wp-json\/wp\/v2\/tags?post=702"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}