{"id":14699,"date":"2018-03-05T19:21:41","date_gmt":"2018-03-05T19:21:41","guid":{"rendered":"http:\/\/jordansguardianangels.org\/?p=14699"},"modified":"2018-07-30T15:58:01","modified_gmt":"2018-07-30T15:58:01","slug":"rare-disease-day-children-around-world-rare-genetic-mutation-share-journeys-facebook-live","status":"publish","type":"post","link":"https:\/\/jordansguardianangels.org\/2018\/03\/05\/rare-disease-day-children-around-world-rare-genetic-mutation-share-journeys-facebook-live\/","title":{"rendered":"Rare Disease Day: Children Around the World With Rare Genetic Mutation Share their Journeys on Facebook Live"},"content":{"rendered":"<section class=\"ffb-id-i1u787f fg-section fg-text-dark\"><div class=\"fg-container container fg-container-large fg-container-lvl--1 \"><div class=\"fg-row row    \" ><div class=\"ffb-id-i1u787g fg-col col-xs-12 col-md-9 col-md-push-3 fg-text-dark\"><p class=\"ffb-id-i1u787h fg-paragraph text-left    fg-text-dark\"><\/p>\n<p>[dropcap]In[\/dropcap]celebration of Rare Disease Day, families from around the world with children diagnosed with a rare genetic mutation potentially linked to autism and Alzheimer's disease, more commonly known as Jordan's Syndrome, connected on Facebook Live to spread their message and stories. <\/p><p class=\"ffb-id-i1u787i fg-paragraph text-left    fg-text-dark\">\"As a lot of our families have experienced, at the time that we got the first diagnosis, the lab that had done the exome sequencing really said, 'We think you might be the first child in the world,'\" said Joe Lang, founder of Jordan's Guardian Angels. \"Now, through divine intervention and lots of other things, we are now 54 families strong. As it started to unfold, we started to realize that this is about more than just our children.\"<\/p><div class=\"ffb-id-1keabv2f fg-row row     fg-text-dark\"><div class=\"ffb-id-1keagn8n fg-col col-xs-12 col-md-12 fg-text-dark\"><div class=\"ffb-id-1keammfk ffg-empty-space fg-text-dark\"><\/div><\/div><div class=\"ffb-id-1kei5777 fg-col col-xs-12 col-md-1 fg-text-dark\"><\/div><div class=\"ffb-id-1keac50m fg-col col-xs-12 col-md-10 fg-text-dark\"><div class=\"ffb-id-1ur19rmp fg-video fg-text-dark\"><div class=\"embed-video-external fg-text-dark ffb-external-1\"><div class=\"embed-responsive\"><iframe loading=\"lazy\"\tclass=\"embed-responsive-item\" title=\"Jordan&#039;s Guardian Angels  2018 Rare Disease Day Facebook\" width=\"1140\" height=\"641\" src=\"https:\/\/www.youtube.com\/embed\/LWNnyxDdFcg?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe><\/div><\/div><\/div><\/div><div class=\"ffb-id-1keaceb2 fg-col col-xs-12 col-md-1 fg-text-dark\"><\/div><div class=\"ffb-id-1kean046 fg-col col-xs-12 col-md-12 fg-text-dark\"><div class=\"ffb-id-1kean047 ffg-empty-space fg-text-dark\"><\/div><\/div><\/div><p class=\"ffb-id-i1u787o fg-paragraph text-left    fg-text-dark\"><\/p>\n<p>The families were joined on Facebook by California State Senator Richard Pan (D-Sacramento), who submitted Senate Resolution 109 today with California State Assemblymember Rob Bonta (D-Oakland) to commemorate Rare Disease Day and highlight Jordan's Syndrome, a mutation in gene PPP2R5D.<\/p>\n<p>\"I have submitted a resolution recognizing today as Rare Disease Day, co-authored by a colleague of mine in the State Assembly, Rob Bonta,\" said Senator Pan. \"Our investment in rare disease really has benefits for all of us. Certainly, on one level, it's about recognizing the importance of rare diseases and the families that struggle with them, but it's also recognizing that we all have a stake, together, in children and people with rare diseases, and that the research that is going into this isn't just benefiting those individual families - it's benefiting all of us.\"<\/p>\n<p><\/p><div class=\"ffb-id-1vuhu098 fg-paragraph ff-richtext text-left    fg-text-dark\"><\/p>\n<p>\"We need to be sure that families know that there is hope, and that the people of the world are behind you,\" Senator Pan added.<\/p>\n<p><a href=\"https:\/\/www.facebook.com\/RichardPanMD\/videos\/10155583609525674\/\">Click here to watch Senator Pan's livestream of the Rare Disease Day event.<\/a><\/p>\n<p><a href=\"https:\/\/www.facebook.com\/carole.bakhos\/videos\/10100240224999187\/\">Click here to watch PPP2R5D's livestream of the Rare Disease Day event, hosted by Carole Bakhos of Denver, CO.<\/a><\/p>\n<p><\/div><\/div><div 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