{"id":58547,"date":"2014-12-23T11:13:45","date_gmt":"2014-12-23T16:13:45","guid":{"rendered":"https:\/\/rarediseases.org\/saving-eliza\/"},"modified":"2022-12-01T11:40:00","modified_gmt":"2022-12-01T16:40:00","slug":"saving-eliza","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/saving-eliza\/","title":{"rendered":"Saving Eliza"},"content":{"rendered":"

I\u2019m honored to be speaking at the NORD Breakthrough Summit on Rare Diseases and Orphan Products in October.\u00a0\u00a0 Social media, as I continue to learn more every day, is an always changing, rapidly moving, fickle and funny world.\u00a0 Trends can get hot and can come and go overnight, and others go on and on (ALS).\u00a0 Our journey for the last year has been to advocate and fundraise for Sanfilippo Syndrome, with which my 4-year-old daughter Eliza was diagnosed. \u00a0This rapidly degenerative, terminal disease has no treatment to slow it, and no cure..but a clinical trial is potentially only months away.\u00a0 We\u2019ve been fortunate to have some ideas take off and be successful in the social media world, like the 3- minute viral video at www.SavingEliza.com<\/a>, which raised over $1M in less than 3 months. \u00a0At the NORD Summit, I will talk about how that came to be and lessons learned along the way.<\/p>\n

I will also talk about our latest project.\u00a0 The ALS Ice Bucket Challenge success was a wake-up call for all fundraising, of just how connected we all can be, through the simple power of sharing.\u00a0 After hearing the first report of ALS raising $1M over just one weekend, we launched our #Sing2Lines for #SavingEliza challenge campaign to stop Sanfilippo, at www.facebook.com\/ElizaOStory<\/a>. We wanted to take a shot, and set ourselves apart as different.\u00a0 It\u2019s catching on, and we hope it can bring awareness and much needed funding for Sanfilippo.\u00a0 We will talk about how we launched that and, by the time of the talk, we can give an update on progress.<\/p>\n

I\u2019m also going to talk about some advice received along the way, and how we\u2019ve adapted to social media. \u00a0This will include things like 1) Start with the story of one\u00a0 2) Never mention the word Sanfilippo..wait, what?\u00a0 3) You (before diagnosis) are your audience.<\/p>\n

There are great people in this world who want to help all of our causes.\u00a0 They just don\u2019t know about us.\u00a0 We have to make it clear and easy for them in the crowded social media world.\u00a0 Creativity, validation, and a sense of timing seem to be some key elements that help set the successful campaigns apart. I look forward to sharing our experiences in the hope it can help other foundations in their efforts.<\/p>\n

ADDITIONAL INFORMATION ABOUT THE NORD SUMMIT<\/p>\n","protected":false},"excerpt":{"rendered":"

I\u2019m honored to be speaking at the NORD Breakthrough Summit on Rare Diseases and Orphan Products in October<\/p>\n","protected":false},"author":1,"featured_media":11777,"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":[232,210,191,192,505],"tags":[],"class_list":["post-58547","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-advocacy","category-industry","category-medical","category-patients-members","category-patient-stories"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58547","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=58547"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58547\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media\/11777"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=58547"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=58547"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=58547"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}