{"id":281862,"date":"2025-11-06T15:06:29","date_gmt":"2025-11-06T20:06:29","guid":{"rendered":"https:\/\/rarediseases.org\/?p=281862"},"modified":"2025-11-06T15:24:26","modified_gmt":"2025-11-06T20:24:26","slug":"media-advisory-rare-disease-zebra-families-gathering-at-the-milwaukee-county-zoo","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/media-advisory-rare-disease-zebra-families-gathering-at-the-milwaukee-county-zoo\/","title":{"rendered":"Media Advisory: Rare Disease \u201cZebra\u201d Families Gathering at the Milwaukee County Zoo"},"content":{"rendered":"<p style=\"text-align: center;\"><em><span class=\"TextRun SCXW125107752 BCX0\" lang=\"EN-US\" xml:lang=\"EN-US\" data-contrast=\"auto\"><span class=\"NormalTextRun SCXW125107752 BCX0\" data-ccp-parastyle=\"No Spacing\">National Organization for Rare\u00a0<\/span><span class=\"NormalTextRun SCXW125107752 BCX0\" data-ccp-parastyle=\"No Spacing\">Disorders\u00a0<\/span><span class=\"NormalTextRun SCXW125107752 BCX0\" data-ccp-parastyle=\"No Spacing\">(NORD<\/span><span class=\"NormalTextRun SCXW125107752 BCX0\" data-ccp-parastyle=\"No Spacing\"><sup>\u00ae<\/sup><\/span><span class=\"NormalTextRun SCXW125107752 BCX0\" data-ccp-parastyle=\"No Spacing\">)<\/span><span class=\"NormalTextRun SCXW125107752 BCX0\" data-ccp-parastyle=\"No Spacing\">\u00a0<\/span><span class=\"NormalTextRun SCXW125107752 BCX0\" data-ccp-parastyle=\"No Spacing\">Brings Together 100+\u00a0<\/span><span class=\"NormalTextRun SCXW125107752 BCX0\" data-ccp-parastyle=\"No Spacing\">Wis<\/span><span class=\"NormalTextRun SCXW125107752 BCX0\" data-ccp-parastyle=\"No Spacing\">.<\/span><span class=\"NormalTextRun SCXW125107752 BCX0\" data-ccp-parastyle=\"No Spacing\">\u00a0<\/span><span class=\"NormalTextRun SCXW125107752 BCX0\" data-ccp-parastyle=\"No Spacing\">Families\u00a0<\/span><span class=\"NormalTextRun SCXW125107752 BCX0\" data-ccp-parastyle=\"No Spacing\">for a Day of Hope, Learning, and Community\u00a0<\/span><span class=\"NormalTextRun SCXW125107752 BCX0\" data-ccp-parastyle=\"No Spacing\">During National Family Caregivers Month<\/span><\/span><\/em><\/p>\n<p><b><span data-contrast=\"auto\">WHAT:<\/span><\/b><span data-contrast=\"auto\">\u00a0As\u00a0National Family Caregivers Month\u00a0shines a light on those who care for loved ones,\u00a0the National Organization for Rare Disorders (NORD<sup>\u00ae<\/sup>) will bring together\u00a0more than 100 Wisconsin families\u00a0impacted by rare disease at the Milwaukee County Zoo\u00a0this Saturday\u00a0for <a href=\"https:\/\/livingrare.org\/\" target=\"_blank\" rel=\"noopener nofollow\">Living Rare, Living Stronger<\/a>.<sup>\u00ae<\/sup>\u00a0With over 500,000 Wisconsinites living with rare disease, the event\u00a0offers emotional visuals and heartfelt stories as rare disease patients, caregivers, and advocates (the \u201czebras\u201d of\u00a0medicine)\u00a0unite to navigate life with a rare disease.<\/span><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;201341983&quot;:0,&quot;335551550&quot;:1,&quot;335551620&quot;:1,&quot;335559685&quot;:0,&quot;335559737&quot;:0,&quot;335559738&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><b><span data-contrast=\"auto\">BEST PHOTO\/VIDEO OPPORTUNITIES:<\/span><\/b><\/p>\n<ul>\n<li><span data-contrast=\"auto\"><strong>8\u20139 a.m.:\u00a0<\/strong>Breakfast, family arrivals, interviews with caregivers and patients<\/span><span data-ccp-props=\"{&quot;335559739&quot;:0}\">\u00a0<\/span><\/li>\n<li><span data-contrast=\"auto\"><strong>9:10\u20139:30 a.m.:<\/strong>\u00a0Veteran\u00a0Henry \u201cHank\u201d Heren\u00a0shares his rare disease journey<\/span><span data-ccp-props=\"{&quot;335559739&quot;:0}\">\u00a0<\/span><\/li>\n<li><span data-contrast=\"auto\"><strong>10:15\u201311 a.m.<\/strong>:\u00a0Caregivers and families tell their stories in\u00a0\u201cFinding\u00a0Your Rare\u00a0Village\u201d\u00a0<\/span><span data-ccp-props=\"{&quot;335559739&quot;:0}\">\u00a0<\/span><\/li>\n<li><span data-contrast=\"auto\"><strong>2\u00a0p.m.\u2013on:<\/strong> Networking and zoo activities with rare families\u00a0<\/span><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;201341983&quot;:0,&quot;335551550&quot;:1,&quot;335551620&quot;:1,&quot;335559685&quot;:0,&quot;335559737&quot;:0,&quot;335559738&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:279}\">\u00a0<\/span><\/li>\n<\/ul>\n<p><b><span data-contrast=\"auto\">WHEN:\u00a0<\/span><\/b><span data-contrast=\"auto\">Saturday, Nov.\u00a08, 2025<\/span><span data-ccp-props=\"{&quot;335559739&quot;:0}\">\u00a0<\/span><\/p>\n<ul>\n<li><span data-contrast=\"auto\">Breakfast: 8 a.m. <\/span><\/li>\n<li><span data-contrast=\"auto\">Program: 9 a.m.\u20132 p.m. <\/span><\/li>\n<li><span data-contrast=\"auto\">Zoo activities to follow<\/span><span data-ccp-props=\"{&quot;335559685&quot;:0,&quot;335559739&quot;:0}\">\u00a0<\/span><\/li>\n<\/ul>\n<p><b><span data-contrast=\"auto\">WHERE:<\/span><\/b><span data-contrast=\"auto\"> Milwaukee County Zoo \u2013 Zoofari Conference Center,\u00a09715 West Bluemound Road, Milwaukee, Wis.,\u00a05322<\/span><\/p>\n<p><b><span data-contrast=\"auto\">WHY IT MATTERS:<\/span><\/b><br \/>\n<span data-contrast=\"auto\">More than 30 million Americans \u2014\u00a0<\/span>including <b><span data-contrast=\"auto\">more than 500,000 Wisconsinites<\/span><\/b><span data-contrast=\"auto\"> \u2014 live with a rare disease. Many rely on family caregivers who confront medical, emotional, and financial challenges. During <\/span><b><span data-contrast=\"auto\">National Family Caregivers Month\u00a0<\/span><\/b><span data-contrast=\"auto\">this November<\/span><span data-contrast=\"auto\">,\u00a0NORD\u2019s event offers tools, expert guidance, and community connections to support those who care for\u00a0rare loved\u00a0ones.<\/span><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;201341983&quot;:0,&quot;335551550&quot;:1,&quot;335551620&quot;:1,&quot;335559685&quot;:0,&quot;335559737&quot;:0,&quot;335559738&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:279}\">\u00a0<\/span><\/p>\n<p><b><span data-contrast=\"auto\">WHO:<\/span><\/b><span data-ccp-props=\"{&quot;335559739&quot;:0}\">\u00a0<\/span><\/p>\n<ul>\n<li>Pamela K. Gavin, CEO, NORD<\/li>\n<li>Local advocates, patients, and caregivers, including:\n<ul>\n<li>John \u201cJJ\u201d Geeleher, a high school senior and rare disease advocate living with the rare genetic disorder <a href=\"https:\/\/rarediseases.org\/rare-diseases\/ladd-syndrome\/\">LADD Syndrome<\/a><\/li>\n<li>James Griffin, a rare disease advocate and author living with <a href=\"https:\/\/rarediseases.org\/rare-diseases\/sickle-cell-disease\/\">sickle cell<\/a><\/li>\n<li>Lani Knutson, Legislative Advocacy Team lead for <a href=\"https:\/\/www.curecmd.org\/\" target=\"_blank\" rel=\"noopener nofollow\">Cure\u00a0CMD<\/a>;\u00a0rare\u00a0mom and caregiver<\/li>\n<li>Courtney Miles, rare mom and caregiver<\/li>\n<\/ul>\n<\/li>\n<li>Experts from\u00a0<a href=\"https:\/\/rarediseases.org\/center-of-excellence\/childrens-wisconsin-medical-college-of-wisconsin\/\">NORD Rare Disease Centers of Excellence<\/a> at\u00a0<strong>Children\u2019s Wisconsin<\/strong>,<strong>\u00a0the\u00a0Medical College of Wisconsin<\/strong>, and the<strong>\u00a0University of Wisconsin\u00a0<\/strong><\/li>\n<\/ul>\n<p><span data-contrast=\"auto\">Learn more about the Living Rare, Living Stronger event at\u00a0<\/span><a href=\"https:\/\/livingrare.org\/\" target=\"_blank\" rel=\"noopener nofollow\"><span data-contrast=\"none\">livingrare.org.<\/span><\/a><span data-ccp-props=\"{&quot;335559739&quot;:0}\">\u00a0<\/span><\/p>\n<p><b><span data-contrast=\"auto\">MEDIA RSVP:<\/span><\/b><br \/>\n<span data-contrast=\"auto\">To attend\u00a0and\/or schedule interviews with speakers or attendees, please contact:\u00a0Jackie Avial, Director of Content, NORD,\u00a0<\/span><a href=\"mailto:javial@rarediseases.org\"><span data-contrast=\"none\">javial@rarediseases.org<\/span><\/a><span data-contrast=\"auto\">,\u00a0475-203-7025<\/span><span data-ccp-props=\"{&quot;335559739&quot;:0}\">\u00a0<\/span><\/p>\n<p><b><span data-contrast=\"auto\">ABOUT NORD:\u00a0<\/span><\/b><br \/>\n<span data-contrast=\"auto\">Founded in 1983, the National Organization for Rare Disorders (NORD<sup>\u00ae<\/sup>) is a leading independent, nonpartisan, nonprofit patient advocacy organization dedicated to improving the health and lives of over 30 million Americans living with rare diseases. In partnership with more than 350 disease-specific member patient organizations, NORD drives progress in rare disease research, care, and policy. <a href=\"https:\/\/rarediseases.org\/about-us\/\">Learn more.<\/a><\/span><\/p>\n","protected":false},"excerpt":{"rendered":"<p>National Organization for Rare\u00a0Disorders\u00a0(NORD\u00ae)\u00a0Brings Together 100+\u00a0Wis.\u00a0Families\u00a0for a Day of Hope, Learning, and Community\u00a0During National Family Caregivers Month WHAT:\u00a0As\u00a0National Family Caregivers Month\u00a0shines a light on those who care for loved ones,\u00a0the &hellip; <\/p>\n<p class=\"link-more\"><a href=\"https:\/\/rarediseases.org\/es\/media-advisory-rare-disease-zebra-families-gathering-at-the-milwaukee-county-zoo\/\" class=\"more-link\">Continue reading<span class=\"screen-reader-text\"> &#8220;Media Advisory: Rare Disease \u201cZebra\u201d Families Gathering at the Milwaukee County Zoo&#8221;<\/span><\/a><\/p>\n","protected":false},"author":13,"featured_media":281864,"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":[503,504],"tags":[],"class_list":["post-281862","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-events","category-press-releases"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/281862","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\/13"}],"replies":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/comments?post=281862"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/281862\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media\/281864"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=281862"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=281862"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=281862"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}