{"id":1316,"date":"2021-10-21T19:42:03","date_gmt":"2021-10-21T19:42:03","guid":{"rendered":"https:\/\/barthsyndrome.ca\/?page_id=1316"},"modified":"2023-08-30T02:44:03","modified_gmt":"2023-08-30T02:44:03","slug":"science-medical-issues","status":"publish","type":"page","link":"https:\/\/barthsyndrome.ca\/science-medical-issues\/","title":{"rendered":"Science &#038; Medical Issues"},"content":{"rendered":"<p><div class=\"fusion-fullwidth fullwidth-box fusion-builder-row-1 fusion-flex-container fusion-parallax-none nonhundred-percent-fullwidth non-hundred-percent-height-scrolling\" style=\"--awb-background-position:center top;--awb-background-blend-mode:darken;--awb-border-radius-top-left:0px;--awb-border-radius-top-right:0px;--awb-border-radius-bottom-right:0px;--awb-border-radius-bottom-left:0px;--awb-padding-top:18%;--awb-padding-bottom:3%;--awb-background-image:linear-gradient(0deg, rgba(10,92,152,0) 59%,#0a5c98 100%),url(https:\/\/barthsyndrome.ca\/wp-content\/uploads\/2021\/10\/BarthBackground-RyanRitter-2.jpg);;--awb-background-size:cover;--awb-flex-wrap:wrap;\" ><div class=\"fusion-builder-row fusion-row fusion-flex-align-items-flex-start fusion-flex-content-wrap\" style=\"max-width:calc( 1140px + 0px );margin-left: calc(-0px \/ 2 );margin-right: calc(-0px \/ 2 );\"><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-0 fusion_builder_column_2_5 2_5 fusion-flex-column\" style=\"--awb-bg-size:cover;--awb-width-large:40%;--awb-margin-top-large:0px;--awb-spacing-right-large:0px;--awb-margin-bottom-large:0px;--awb-spacing-left-large:0px;--awb-width-medium:100%;--awb-order-medium:0;--awb-spacing-right-medium:0px;--awb-spacing-left-medium:0px;--awb-width-small:100%;--awb-order-small:0;--awb-spacing-right-small:0px;--awb-spacing-left-small:0px;\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><\/div><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-1 fusion_builder_column_3_5 3_5 fusion-flex-column fusion-animated\" style=\"--awb-padding-bottom:82px;--awb-bg-position:center center;--awb-bg-size:cover;--awb-width-large:60%;--awb-margin-top-large:0px;--awb-spacing-right-large:0px;--awb-margin-bottom-large:0px;--awb-spacing-left-large:0px;--awb-width-medium:100%;--awb-spacing-right-medium:0px;--awb-spacing-left-medium:0px;--awb-width-small:100%;--awb-spacing-right-small:0px;--awb-spacing-left-small:0px;\" data-animationType=\"fadeInUp\" data-animationDuration=\"1.0\" data-animationOffset=\"top-into-view\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-title title fusion-title-1 fusion-sep-none fusion-title-center fusion-title-text fusion-title-size-two\" style=\"--awb-text-color:#ffffff;--awb-font-size:75px;\"><h2 class=\"fusion-title-heading title-heading-center fusion-responsive-typography-calculated\" style=\"margin:0;font-size:1em;letter-spacing:-3px;--fontSize:75;line-height:1;\">Science &amp;<br \/>Medical Issues<\/h2><\/div><\/div><\/div><\/div><\/div><div class=\"fusion-fullwidth fullwidth-box fusion-builder-row-2 fusion-flex-container nonhundred-percent-fullwidth non-hundred-percent-height-scrolling\" style=\"--awb-border-radius-top-left:0px;--awb-border-radius-top-right:0px;--awb-border-radius-bottom-right:0px;--awb-border-radius-bottom-left:0px;--awb-padding-top:6%;--awb-padding-bottom:4%;--awb-background-color:rgba(247,235,249,0);--awb-flex-wrap:wrap;\" ><div class=\"fusion-builder-row fusion-row fusion-flex-align-items-flex-start fusion-flex-content-wrap\" style=\"max-width:calc( 1140px + 0px );margin-left: calc(-0px \/ 2 );margin-right: calc(-0px \/ 2 );\"><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-2 fusion_builder_column_1_1 1_1 fusion-flex-column fusion-animated\" style=\"--awb-padding-right:40px;--awb-padding-bottom:20px;--awb-bg-size:cover;--awb-width-large:100%;--awb-margin-top-large:0px;--awb-spacing-right-large:0px;--awb-margin-bottom-large:0px;--awb-spacing-left-large:0px;--awb-width-medium:100%;--awb-spacing-right-medium:0px;--awb-spacing-left-medium:0px;--awb-width-small:100%;--awb-spacing-right-small:0px;--awb-spacing-left-small:0px;\" data-animationType=\"fadeInUp\" data-animationDuration=\"1.0\" data-animationOffset=\"top-into-view\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-text fusion-text-1\"><p>The Barth Syndrome Foundation of Canada (BSFCa) is an affiliate of the Barth Syndrome Foundation, Inc. (BSF). We are a source of support for research into the fundamental understanding of Barth syndrome (BTHS), diagnosis and treatments.<\/p>\n<p><span style=\"background-color: rgba(247, 235, 249, 0); color: var(--body_typography-color); font-family: var(--body_typography-font-family); font-size: var(--body_typography-font-size); font-style: var(--body_typography-font-style,normal); font-weight: var(--body_typography-font-weight); letter-spacing: var(--body_typography-letter-spacing);\">For researchers and scientists carrying out research BSF has available:<\/span><\/p>\n<ul>\n<li><b><u><a href=\"https:\/\/barthsyndrome.ca\/research-grant-program\/\" target=\"_blank\" rel=\"noopener noreferrer\">&#8220;Seed&#8221; funding<\/a><\/u><\/b> to investigators for testing initial hypotheses and collecting preliminary data leading to successful long-term funding by the National Institutes of Health and other major granting institutions. Proposals are carefully scrutinized before awards are made. Since 2007, BSFCa has contributed to research grant funding.\n<\/li>\n<li>An <b><u><a href=\"https:\/\/barthsyndrome.ca\/international-scientific-medical-family-conference\/\" target=\"_blank\" rel=\"noopener noreferrer\">international conference<\/a><\/u><\/b>, held every two years, which brings together leading scientists and researchers from across the world. The conference has a series of events including meetings, lectures and forums devoted to the exchange of the latest findings relating to basic research.\n<\/li>\n<li>The <b><u><a href=\"https:\/\/barthsyndrome.ca\/barth-syndrome-registry-repository\/\" target=\"_blank\" rel=\"noopener noreferrer\">largest active registry<\/a><\/u><\/b> of individuals with BTHS. The registry is regularly updated and contains a wealth of information relating to medical histories and physiological data.\n<\/li>\n<li>Access to BSF&#8217;s international <b><u><a href=\"https:\/\/barthsyndrome.ca\/scientific-medical-advisory-board\/\" target=\"_blank\" rel=\"noopener noreferrer\">Scientific &amp; Medical Advisory Board (SMAB)<\/a><\/u><\/b>, which comprises world renown clinicians and scientists who are leading experts in Barth syndrome. The SMAB is an integral part of the organization. This group forms the review panel for research grants and provides scientific and medical advice and guidance to BSF&#8217;s Board of Directors.\n<\/li>\n<li>Access to the <b><u><a href=\"https:\/\/barthsyndrome.ca\/scientific-medical-publications\/\" target=\"_blank\" rel=\"noopener noreferrer\">world&#8217;s largest reference source<\/a><\/u><\/b> on published literature on BTHS, which includes an up-to-date bibliography of articles relevant to Barth syndrome.\n<\/li>\n<li>Access to the private &#8220;Docs Listserv&#8221;- an ongoing forum where members of our international Scientific and Medical Advisory Board, clinicians and researchers collaborate, ask questions and exchange the latest information.  <u><b><a href=\"https:\/\/www.barthsyndrome.org\/contactfamilyservicesadvocacy.html\" target=\"_blank\" rel=\"noopener noreferrer\">Please contact BSF<\/a><\/b><\/u> for more information on how to join our ListServ.\n<\/li>\n<li><u><a href=\"https:\/\/www.barthsyndrome.org\/research\/tafazzindatabase.html\" target=\"_blank\" rel=\"noopener noreferrer\">Human <i>Tafazzin<\/i> Gene Mutation &amp; Variation Database<\/a><\/u><\/li>\n<li><u><a href=\"https:\/\/barthsyndrome.org\/research\/presentations\/\" target=\"_blank\" rel=\"noopener noreferrer\">Scientific &amp; Medical Presentations<\/a><\/u>\n<\/li>\n<li><u><a href=\"https:\/\/www.barthsyndrome.org\/barthsyndrome\/videos\/\" target=\"_blank\" rel=\"noopener noreferrer\">Conference and Virtual Symposium Recordings including Webinars<\/a><\/u><\/li>\n<li><u><a href=\"https:\/\/www.barthsyndrome.org\/research\/animalandcellularmodelsofBarthsyndrome.html\" target=\"_blank\" rel=\"noopener noreferrer\">Animal and Cellular Models of Barth Syndrome<\/a><\/u><\/li>\n<li><u><a href=\"https:\/\/www.barthsyndrome.org\/research\/celllinesandbiologicalsamples.html\" target=\"_blank\" rel=\"noopener noreferrer\">Cell Lines &amp; Biological Samples<\/a><\/u><\/li>\n<\/ul>\n<p><b>For further information, please contact <span style=\"color: var(--awb-text-color); font-family: var(--awb-text-font-family); font-size: var(--awb-font-size); font-style: var(--awb-text-font-style); letter-spacing: var(--awb-letter-spacing); text-align: var(--awb-content-alignment); text-transform: var(--awb-text-transform); background-color: var(--awb-bg-color-medium-hover);\">Melissa Huang, PhD, <\/span><span style=\"color: var(--awb-text-color); font-family: var(--awb-text-font-family); font-size: var(--awb-font-size); font-style: var(--awb-text-font-style); letter-spacing: var(--awb-letter-spacing); text-align: var(--awb-content-alignment); text-transform: var(--awb-text-transform); background-color: var(--awb-bg-color-medium-hover);\">Clinical Research Coordinator <\/span><span style=\"color: var(--awb-text-color); font-family: var(--awb-text-font-family); font-size: var(--awb-font-size); font-style: var(--awb-text-font-style); letter-spacing: var(--awb-letter-spacing); text-align: var(--awb-content-alignment); text-transform: var(--awb-text-transform); background-color: var(--awb-bg-color-medium-hover);\">Barth Syndrome Foundation, Inc.<\/span><span style=\"color: var(--awb-text-color); font-family: var(--awb-text-font-family); font-size: var(--awb-font-size); font-style: var(--awb-text-font-style); letter-spacing: var(--awb-letter-spacing); text-align: var(--awb-content-alignment); text-transform: var(--awb-text-transform); background-color: var(--awb-bg-color-medium-hover);\"> <\/span><span style=\"color: var(--awb-text-color); font-family: var(--awb-text-font-family); font-size: var(--awb-font-size); font-style: var(--awb-text-font-style); letter-spacing: var(--awb-letter-spacing); text-align: var(--awb-content-alignment); text-transform: var(--awb-text-transform); background-color: var(--awb-bg-color-medium-hover);\"><u style=\"\"><a href=\"mailto:melissa.huang@barthsyndrome.org\">melissa.huang@barthsyndrome.org<\/a><\/u><\/span><\/b><\/p>\n<ul>\n<\/ul>\n<\/div><\/div><\/div><\/div><\/div><div class=\"fusion-fullwidth fullwidth-box fusion-builder-row-3 fusion-flex-container fusion-parallax-none nonhundred-percent-fullwidth non-hundred-percent-height-scrolling fusion-animated\" style=\"--awb-background-position:center bottom;--awb-border-radius-top-left:0px;--awb-border-radius-top-right:0px;--awb-border-radius-bottom-right:0px;--awb-border-radius-bottom-left:0px;--awb-padding-bottom:4%;--awb-background-image:linear-gradient(180deg, #ffffff 0%,rgba(231,204,182,0.49) 100%),url(https:\/\/barthsyndrome.ca\/wp-content\/uploads\/2019\/10\/cta-background-mandala.jpg);;--awb-background-size:cover;--awb-flex-wrap:wrap;\" data-animationType=\"bounceInDown\" data-animationDuration=\"1.1\" data-animationOffset=\"top-into-view\" ><div class=\"fusion-builder-row fusion-row fusion-flex-align-items-flex-start fusion-flex-content-wrap\" style=\"max-width:1185.6px;margin-left: calc(-4% \/ 2 );margin-right: calc(-4% \/ 2 );\"><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-3 fusion_builder_column_1_6 1_6 fusion-flex-column\" style=\"--awb-bg-size:cover;--awb-width-large:16.666666666667%;--awb-margin-top-large:0px;--awb-spacing-right-large:11.52%;--awb-margin-bottom-large:0px;--awb-spacing-left-large:11.52%;--awb-width-medium:100%;--awb-spacing-right-medium:1.92%;--awb-spacing-left-medium:1.92%;--awb-width-small:100%;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><\/div><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-4 fusion_builder_column_2_3 2_3 fusion-flex-column fusion-animated\" style=\"--awb-padding-top:60px;--awb-padding-right:30px;--awb-padding-bottom:60px;--awb-padding-left:30px;--awb-overflow:hidden;--awb-bg-color:#ffffff;--awb-bg-color-hover:#ffffff;--awb-bg-image:linear-gradient(0deg, rgba(231,204,182,0.76) 0%,rgba(231,204,182,0) 100%);--awb-bg-size:cover;--awb-box-shadow:0px 10px 30px 0px rgba(204,176,146,0.88);;--awb-border-radius:12px 12px 12px 12px;--awb-width-large:66.666666666667%;--awb-margin-top-large:-30px;--awb-spacing-right-large:2.88%;--awb-margin-bottom-large:60px;--awb-spacing-left-large:2.88%;--awb-width-medium:100%;--awb-spacing-right-medium:1.92%;--awb-spacing-left-medium:1.92%;--awb-width-small:100%;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;\" data-animationType=\"rubberBand\" data-animationDuration=\"1.7\" data-animationOffset=\"top-into-view\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-title title fusion-title-2 fusion-sep-none fusion-title-center fusion-title-text fusion-title-size-two\" style=\"--awb-margin-top:-30px;--awb-margin-bottom:10px;--awb-margin-bottom-small:10px;--awb-font-size:60px;\"><h2 class=\"fusion-title-heading title-heading-center fusion-responsive-typography-calculated\" style=\"margin:0;font-size:1em;--fontSize:60;line-height:1;\">Donate please!<\/h2><\/div><div class=\"fusion-text fusion-text-2\"><p style=\"text-align: center;\">The Barth Syndrome Foundation of Canada is a completely volunteer, charitable foundation. We fund critical research and provide support and information to affected individuals, families, and medical professionals.<\/p>\n<\/div><div style=\"text-align:center;\"><a class=\"fusion-button button-flat fusion-button-default-size button-default fusion-button-default button-1 fusion-button-default-span fusion-button-default-type\" style=\"--button_text_transform:uppercase;\" target=\"_self\" href=\"https:\/\/barthsyndrome.ca\/donate\/\"><span class=\"fusion-button-text\">Click Here to DOnate<\/span><\/a><\/div><\/div><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-5 fusion_builder_column_1_6 1_6 fusion-flex-column fusion-no-small-visibility fusion-no-medium-visibility\" style=\"--awb-bg-size:cover;--awb-width-large:16.666666666667%;--awb-margin-top-large:0px;--awb-spacing-right-large:11.52%;--awb-margin-bottom-large:0px;--awb-spacing-left-large:11.52%;--awb-width-medium:100%;--awb-spacing-right-medium:1.92%;--awb-spacing-left-medium:1.92%;--awb-width-small:100%;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><\/div><\/div><\/div><\/div>\n<\/p>\n","protected":false},"excerpt":{"rendered":"","protected":false},"author":4,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"100-width.php","meta":{"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"footnotes":""},"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v22.5 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Science &amp; 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