{"id":58607,"date":"2015-07-30T07:06:42","date_gmt":"2015-07-30T11:06:42","guid":{"rendered":"https:\/\/rarediseases.org\/rare-action-road-tour-oklahoma-city-ok\/"},"modified":"2015-07-30T07:06:42","modified_gmt":"2015-07-30T11:06:42","slug":"rare-action-road-tour-oklahoma-city-ok","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/rare-action-road-tour-oklahoma-city-ok\/","title":{"rendered":"Rare Action\u2122 Road Tour, Oklahoma City, OK"},"content":{"rendered":"

\"Oklahoma<\/a><\/p>\n

Greetings from Oklahoma,<\/p>\n

The awesome folks in the NORD marketing department created the snazzy logo and imagery that you see above (and in all previous posts). Driving through Oklahoma today, it felt like\u00a0I was on that very road. Absolute nothingness for miles in every direction.<\/p>\n

So far the trip has covered about 3,000 miles, with about another 1,000 miles of driving to go.<\/p>\n

 <\/p>\n

\"Tim's<\/a>
Tim’s road trip so far<\/figcaption><\/figure>\n

 <\/p>\n

Here in Oklahoma, I was not only exited to meet our State Ambassador, Rachel Daniels, but we had our first groupie! Rare advocate Tracy Lundy read the blog and reached out to meet up and talk shop in Oklahoma City. Tracy\u00a0has a wealth of medical nutrition experience in government and the private sector and is excited to support NORD’s advocacy in any way she can.\u00a0With Rachel Daniels already on board, we now have a growing grassroots coalition in Oklahoma.<\/p>\n

Here’s the scoop on Rachel, in her own words:<\/p>\n

“I am\u00a0a devoted mother of 5 beautiful children. \u00a0The youngest of\u00a0whom in May of 2014 was diagnosed as having a very rare condition called Congenital Generalized Lipodystrophy. \u00a0With a degree in Law and Business, I knew that my education would be an invaluable resource one day. \u00a0Public speaking and writing became a passion for me.\u00a0\u00a0It really came to bare when I began\u00a0\u00a0challenging the textbook outcome of my\u00a0daughter\u2019s condition with determination to be a voice that is heard. \u00a0I’ve had the opportunity to speak at the Lipodystrophy Symposium in Ann Arbor Michigan last year as well the Oklahoma State Capital for Rare Disease Day 2015.\u00a0 Both me and my\u00a0daughter are featured in Noah Coughlan\u2019s Documentary \u201cRun For Rare\u201d coming out in 2016.<\/p>\n

\"Tracy<\/a>
Tracy (left) and Rachel<\/figcaption><\/figure>\n

I currently advocate for my daughter and the rare disease community as a whole in efforts to raise awareness and build friendships that last a lifetime.”<\/p><\/blockquote>\n

You can reach out to Rachel at (405) 623-2753.<\/p>\n

Next stop (actually I arrived today – time travel!): Denver, CO<\/p>\n

Join the road trip on twitter with #RareAction<\/strong><\/p>\n

Want to learn more about the Rare Action Network\u2122 and how you can join? \u00a0Visit us on our\u00a0website\u00a0here<\/a>.<\/strong><\/em><\/p>\n

About Tim Boyd<\/em><\/p>\n

Tim is NORD\u2019s Associate Director of State Policy. He lives and works in Washington, D.C. Feel free to reach out to Tim at tboyd@rarediseases.org<\/a><\/em> or at (202) 545-3830.<\/em><\/p>\n","protected":false},"excerpt":{"rendered":"

Greetings from Oklahoma, The awesome folks in the NORD marketing department created the snazzy logo and imagery that you see above (and in all previous posts). Driving through Oklahoma today, … <\/p>\n

Continue reading “Rare Action\u2122 Road Tour, Oklahoma City, OK”<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":11926,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","_price":"","_stock":"","_tribe_ticket_header":"","_tribe_default_ticket_provider":"","_tribe_ticket_capacity":"","_ticket_start_date":"","_ticket_end_date":"","_tribe_ticket_show_description":"","_tribe_ticket_show_not_going":false,"_tribe_ticket_use_global_stock":"","_tribe_ticket_global_stock_level":"","_global_stock_mode":"","_global_stock_cap":"","_tribe_rsvp_for_event":"","_tribe_ticket_going_count":"","_tribe_ticket_not_going_count":"","_tribe_tickets_list":"[]","_tribe_ticket_has_attendee_info_fields":false,"footnotes":""},"categories":[232,190],"tags":[659,526,658],"class_list":["post-58607","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-advocacy","category-featured-news","tag-rare-action","tag-rare-action-network","tag-rare-action-road-tour"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58607","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/comments?post=58607"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58607\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media\/11926"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=58607"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=58607"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=58607"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}