{"id":59403,"date":"2022-04-22T15:03:11","date_gmt":"2022-04-22T19:03:11","guid":{"rendered":"https:\/\/rarediseases.org\/the-running-for-rare-team-crossed-another-finish-line\/"},"modified":"2022-08-16T12:19:16","modified_gmt":"2022-08-16T16:19:16","slug":"the-running-for-rare-team-crossed-another-finish-line","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/the-running-for-rare-team-crossed-another-finish-line\/","title":{"rendered":"The Running for Rare Team Crossed Another Finish Line"},"content":{"rendered":"<p>On Monday, April 18, seven members of NORD\u2019s Running for Rare team stretched their legs and put their sneakers to the pavement to take on the Boston Marathon! During the race, NORD staff members Jaime Pacheco, Ed Neilan, Julie Manus, Amanda Thomas and 36 individuals were present and could be heard loudly from the cheer section.<\/p>\n<p>In addition to running, NORD\u2019s Boston Marathon team is paired with a community partner in the rare disease space to raise money for the Undiagnosed Diseases Network (UDN).<\/p>\n<p>Thank you to our Boston Marathon team:<\/p>\n<ul>\n<li><strong>Jorge Beunaventura<\/strong> was able to earn an Abbott Medal by completing six world marathons thanks to being a part of NORD\u2019s running team! Support Jorge\u2019s fundraiser by clicking <a href=\"https:\/\/fundraisers.hakuapp.com\/fundraisers\/27ad0990d188410db28c\" rel=\"nofollow noopener\" target=\"_blank\">here<\/a>.<\/li>\n<li><strong>Lena Ceballos<\/strong> ran the 2021 NYC and Boston Marathons for NORD and is dedicated to running for her community partner Declan, who is three years old. Support Lena\u2019s fundraiser by clicking <a href=\"https:\/\/fundraisers.hakuapp.com\/fundraisers\/998690636da0da20f638\" rel=\"nofollow noopener\" target=\"_blank\">here<\/a>.<\/li>\n<li><strong>Aprill Lane<\/strong> who runs for her son Mark who has a rare disorder. Support Aprill\u2019s fundraiser by clicking <a href=\"https:\/\/fundraisers.hakuapp.com\/fundraisers\/33ad91fb06ce2811511e\" rel=\"nofollow noopener\" target=\"_blank\">here<\/a>.<\/li>\n<li><strong>Liri Mustafa<\/strong> is a college student who has partnered with Shaylee, a Pompe disease patient. Support Liri\u2019s fundraiser by clicking <a href=\"https:\/\/fundraisers.hakuapp.com\/fundraisers\/84ccedb4cb52f8980117\" rel=\"nofollow noopener\" target=\"_blank\">here<\/a>.<\/li>\n<li><strong>Graciello Reyes<\/strong> is from the Phillipines and was partnered with Nicole, a PNH patient and licensed social worker. Support Graciello\u2019s fundraiser by clicking <a href=\"https:\/\/fundraisers.hakuapp.com\/fundraisers\/513326f88dd3cf1bc807\" rel=\"nofollow noopener\" target=\"_blank\">here<\/a>.<\/li>\n<li><strong>Robert Szvizzero <\/strong>is a law enforcement professional who runs for his Uncle Joe who has PLS. Support Robert\u2019s fundraiser by clicking <a href=\"https:\/\/fundraisers.hakuapp.com\/fundraisers\/9ae3112061653fc75fbf\" rel=\"nofollow noopener\" target=\"_blank\">here<\/a>.<\/li>\n<li><strong>Vivienne Wei Xiong<\/strong> is a scientist for Regenxbio and is also partnered with Shaylee. Support Vivienne\u2019s fundraiser by clicking <a href=\"https:\/\/fundraisers.hakuapp.com\/fundraisers\/c829ca6548f129921e69\" rel=\"nofollow noopener\" target=\"_blank\">here<\/a>.<\/li>\n<\/ul>\n<p>Interested in Running for Rare? You can <a href=\"https:\/\/runningforrare.org\/#1523990314877-96f7786e-db91\" rel=\"nofollow noopener\" target=\"_blank\">apply<\/a> to be added to the 2023 NORD Running for Rare Boston Marathon waitlist. Bibs will be distributed in late fall and selected runners will be responsible for their mandatory fundraising minimum of $7,500, must wear NORD apparel while running, and be paired with a community partner. <a href=\"https:\/\/runningforrare.org\/#1523990314877-96f7786e-db91\" rel=\"nofollow noopener\" target=\"_blank\">View the website to learn more<\/a>.<\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>On Monday, April 18, seven members of NORD\u2019s Running for Rare team stretched their legs and put their sneakers to the pavement to take on the Boston Marathon! During the &hellip; <\/p>\n<p class=\"link-more\"><a href=\"https:\/\/rarediseases.org\/es\/the-running-for-rare-team-crossed-another-finish-line\/\" class=\"more-link\">Continue reading<span class=\"screen-reader-text\"> \u00abThe Running for Rare Team Crossed Another Finish Line\u00bb<\/span><\/a><\/p>\n","protected":false},"author":47,"featured_media":0,"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":[190],"tags":[937,975],"class_list":["post-59403","post","type-post","status-publish","format-standard","hentry","category-featured-news","tag-boston-marathon","tag-running-for-rare"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59403","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\/47"}],"replies":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/comments?post=59403"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59403\/revisions"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=59403"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=59403"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=59403"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}