{"id":58581,"date":"2015-06-22T14:39:11","date_gmt":"2015-06-22T18:39:11","guid":{"rendered":"https:\/\/rarediseases.org\/member-spotlight-umdf\/"},"modified":"2015-06-22T14:39:11","modified_gmt":"2015-06-22T18:39:11","slug":"member-spotlight-umdf","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/member-spotlight-umdf\/","title":{"rendered":"Member Spotlight: UMDF"},"content":{"rendered":"<p>&nbsp;<\/p>\n<p>The UMDF Mission is to promote research and education for the diagnosis, treatment, and cure of mitochondrial disorders and to provide support to affected individuals and families.\u00a0 To learn more about UMDF, please go to: www.umdf.org<\/p>\n<p><strong>1.)\u00a0\u00a0 What does it mean to you personally to be a patient organization serving the rare community?<\/strong><\/p>\n<ol>\n<li>Fulfilling a necessary need to a group that has few resources<\/li>\n<li>It means we have to keep a bi-directional lines of communication so we can measure our impact and needs that are not being met<\/li>\n<\/ol>\n<p><strong>2.)\u00a0\u00a0 What do you find your patient community values most from your organization?<\/strong><\/p>\n<ol>\n<li>Educational resources \u2013 web site and newsletter<\/li>\n<li>Support and empowerment<\/li>\n<li>Support of necessary research<\/li>\n<li>Professional involvement with Congress, NIH, academic institutions, industry and global collaboration<\/li>\n<\/ol>\n<p><strong>3.)\u00a0\u00a0 What are some of the challenges your organization has faced?<\/strong><\/p>\n<ol>\n<li>Congress, NIH, academic institutions, industry and global collaboration<\/li>\n<li>Social media<\/li>\n<li>Funding<\/li>\n<li>Education<\/li>\n<li>Limited audience to draw from<\/li>\n<\/ol>\n<p><strong>4.)\u00a0\u00a0 Whats been your most successful awareness campaign and\/or fundraising event?<\/strong><\/p>\n<ol>\n<li><a href=\"https:\/\/www.energyforlifewalk.org\/site\/c.ogIPLYPJJtH\/b.5718643\/k.BDFE\/Home.htm\" target=\"_blank\" rel=\"noopener nofollow\">Energy for Life Walks<\/a> \u2013 we do 28 across the country<\/li>\n<\/ol>\n<p><a href=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2015\/06\/Media-UMDF.png\" data-rel=\"lightbox-image-0\" data-rl_title=\"\" data-rl_caption=\"\" title=\"\"><img loading=\"lazy\" decoding=\"async\" class=\"alignnone size-full wp-image-20337\" src=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2015\/06\/Media-UMDF.png\" alt=\"\" width=\"231\" height=\"179\" \/><\/a><\/p>\n<p>&nbsp;<\/p>\n<p><strong>The United Mitochondrial Disease Foundation<\/strong><\/p>\n<p>Charles A. Mohan, Jr., <strong>CEO\/Executive Director<\/strong><\/p>\n<p>&nbsp;<\/p>\n<p>8085 Saltsburg Road &#8211; Suite 201<\/p>\n<p>Pittsburgh, PA\u00a0\u00a0 15239<\/p>\n<p>&nbsp;<\/p>\n<p>Office: 412.793.8077 ext. 111<\/p>\n<p>Mobile: 412.952.0898<\/p>\n<p>Fax: 412-793-6477<\/p>\n<p>Office e-mail: chuckm@umdf.org<\/p>\n<p>&nbsp;<\/p>\n<p><em>NORD is excited to be putting the spotlight on UMDF this week! Stay tuned for posts about UMDF on NORD social media throughout the week. If you would like your NORD Member Organization to be in the spotlight for the week, email your NORD Membership Manager for more information.\u00a0<\/em><\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Check out this Q&#038;A with United Mitochondrial Disease Foundation!<\/p>\n","protected":false},"author":1,"featured_media":11856,"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":[1],"tags":[601,600,602,603],"class_list":["post-58581","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uncategorized","tag-energy-for-life-walkathon","tag-member-spotlight","tag-mitochondrial-disorders","tag-umdf"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58581","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=58581"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58581\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media\/11856"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=58581"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=58581"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=58581"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}