{"id":259714,"date":"2024-04-16T13:46:02","date_gmt":"2024-04-16T17:46:02","guid":{"rendered":"https:\/\/rarediseases.org\/?p=259714"},"modified":"2024-04-16T13:47:14","modified_gmt":"2024-04-16T17:47:14","slug":"sarah-volunteer","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/sarah-volunteer\/","title":{"rendered":"Becoming a Catalyst for Change: Sarah\u2019s Story in Honor of National Volunteer Month\u00a0"},"content":{"rendered":"

By Sarah F.<\/span>\u00a0<\/span><\/p>\n

\"NORD<\/p>\n

I never imagined I would become a rare disease advocate or volunteer, but my life\u2019s journey led me to this role. Two key moments in my life that led me down this path include:\u00a0<\/span>\u00a0<\/span><\/p>\n

    \n
  1. The birth of our son who, after a 12-year odyssey, was diagnosed with <\/span>Recessive Titinopathy<\/span><\/a>, a rare muscle disease.\u00a0<\/span>\u00a0<\/span><\/li>\n<\/ol>\n
      \n
    1. Meeting a world-renowned muscle disease researcher<\/span>, Dr. Alan Beggs, PhD<\/span><\/a>., Director of the Manton Center for Orphan Disease Research at Boston Childrens Hospital and Sir Edwin & Lady Manton Professor of Pediatrics at Harvard Medical School, both part of the <\/span>Harvard Medical School Affiliated Hospitals \u2013 NORD Center of Excellence for Rare Disorders<\/span><\/a>.<\/span>\u00a0<\/span><\/li>\n<\/ol>\n

      The first of these events is the driving force behind my passion for this work, and the second has opened my eyes to the possibility of a treatment and how I might act as a catalyst for change for our community.\u00a0<\/span>\u00a0<\/span><\/p>\n

      I founded <\/span>Team Titin<\/span><\/a> to serve those living with, caring for, or researching titin (TTN) related muscle and heart disorders. To achieve this <\/span>mission<\/span><\/a>, we focus on four key pillars: Connection, Advocacy, Care, and Research. We recently became a Member of NORD, and I am thankful for NORD\u2019s support with <\/span>tools to help develop our nonprofit<\/span><\/a>.<\/span>\u00a0<\/span><\/p>\n

      I also enjoyed working as a volunteer with NORD\u2019s Medical Editor, Marsha Lanes, to create the NORD Rare Disease Report on <\/span>titinopathy<\/span><\/a>. Having disease information on a website like NORD\u2019s helps us to spread the word and connect with more families around the world that might be feeling lost, confused, or alone. It is important for doctors and patients to have an online resource with reliable information on the diagnosis, symptoms, and causes of titinopathy.\u00a0<\/span>\u00a0<\/span><\/p>\n

      As we celebrate National Volunteer Month this April, I hope you can follow <\/span>your <\/span><\/i>passion to make a difference and be inspired by the possibility of a brighter future for your community.\u00a0<\/span>\u00a0<\/span><\/p>\n

      Want to learn more about volunteering with NORD? Attend our upcoming webinar on Thursday, April 25, 2024 at 7:00pm ET! Register at bit.ly\/4aFwQhq<\/a>.<\/strong><\/p>\n

      Ready to make a difference? Sign up to volunteer with NORD today at\u00a0rarediseases.org\/volunteer-application<\/a>.<\/strong><\/p>\n","protected":false},"excerpt":{"rendered":"

      By Sarah F.\u00a0 I never imagined I would become a rare disease advocate or volunteer, but my life\u2019s journey led me to this role. Two key moments in my life … <\/p>\n

      Continue reading “Becoming a Catalyst for Change: Sarah\u2019s Story in Honor of National Volunteer Month\u00a0“<\/span><\/a><\/p>\n","protected":false},"author":1,"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":[662],"tags":[],"class_list":["post-259714","post","type-post","status-publish","format-standard","hentry","category-get-involved"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/259714","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=259714"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/259714\/revisions"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=259714"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=259714"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=259714"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}