{"id":58611,"date":"2015-08-03T22:00:59","date_gmt":"2015-08-04T02:00:59","guid":{"rendered":"https:\/\/rarediseases.org\/rare-action-road-tour-denver-co\/"},"modified":"2015-08-03T22:00:59","modified_gmt":"2015-08-04T02:00:59","slug":"rare-action-road-tour-denver-co","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/rare-action-road-tour-denver-co\/","title":{"rendered":"Rare Action\u2122 Road Tour, Denver, CO"},"content":{"rendered":"

\"Denver,<\/a><\/p>\n

Greetings from\u00a0Denver,<\/p>\n

As the road tour heads further west, the distances between stops grow\u00a0longer and longer. More\u00a0time in the car means less time to blog. But, 10 hours and 632 miles later I made it to Denver. It was somewhat of a tedious drive\u00a0with nothing much to gaze at, however, the payoff was worth it; Denver is a beautiful city.\u00a0Whenever I am outside I can not help but gaze towards the rockies ( I swear I can see peaks still capped in snow).<\/p>\n

With time short I will get right to it. NORD has a wonderful State Ambassador here in Annie Achee. As always, I am happy to let Annie\u00a0tell you her story in her own words:<\/p>\n

\n

“I am happy to introduce myself to the NORD community. My name is Annie Achee. I have been in the world of “rare” disease since 2011, when my husband Dr. Mitch Achee was diagnosed with Leiomyosarcoma (LMS) that year. I am thankful to say that he is currently with no evidence of disease since then. However, I continue to research daily and reach out to various sarcoma nonprofit organizations and am affiliated with four sarcoma \/ cancer organizations to date.<\/p>\n

I created a website for LMS patients and caregivers, which includes a oncological research podcast as well as a nutritional YouTube presentation by a world renowned researcher, both from MD Anderson Cancer Center.<\/p>\n

I am most honored to participate as NORD’s Colorado ambassador. I wish to promote the mission and goals of this fine organization within the state of Colorado, reaching out to rare disease nonprofit organizations to build a coalition of strength in voice and presence, joining ranks with other states throughout the USA.<\/p>\n

My background has been working for the Federal Government for 20 years, ending my career as a Personnel Officer for the Federal Highway Administration, after adoption a baby girl in 1994. While working, I finished my Master Degree in Management and Human Relations and found this a rewarding accomplishment.<\/p>\n

I look forward to building a sound and enthusiastic relationship with NORD and appreciate this opportunity very much.”<\/p><\/blockquote>\n

Annie and I are still working out which is the best contact information for her to share publicly. In the meantime, feel free to reach out to me and I will put you in contact with her. Also, at the end of my trip I will post a summary of all the Ambassadors with their most up-to-date contact info.<\/p>\n

Next Stop: Salt Lake City<\/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\u00a0Denver, As the road tour heads further west, the distances between stops grow\u00a0longer and longer. More\u00a0time in the car means less time to blog. But, 10 hours and 632 … <\/p>\n

Continue reading “Rare Action\u2122 Road Tour, Denver, CO”<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":11935,"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-58611","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\/58611","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=58611"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58611\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media\/11935"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=58611"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=58611"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=58611"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}