{"id":7443,"date":"2021-12-13T15:42:06","date_gmt":"2021-12-13T15:42:06","guid":{"rendered":"https:\/\/mfrfoundation.org\/?page_id=7443"},"modified":"2023-12-20T18:48:03","modified_gmt":"2023-12-20T18:48:03","slug":"media-releases","status":"publish","type":"page","link":"https:\/\/mfrfoundation.org\/media-releases\/","title":{"rendered":"Media Releases"},"content":{"rendered":"\n<h2>\n\t\tMedia Releases \/\/\n\t<\/h2>\n\t<p>Our Focus is Education &#038; Research of Children&#8217;s Genetic Diseases of the Brain<\/p>\n\t\t\t<a href=\"https:\/\/mfrfoundation.org\/2023-gala-donation\/\" target=\"_self\" role=\"button\" rel=\"noopener\">\n\t\t\t\t\t\tMAKE A DIFFERENCE TODAY!\n\t\t\t\t\t<\/a>\n\t<p>MFRF has provided leadership and raised approximately $2.5 million of funding for projects spanning its mission and vision across three pillars: Research of Treatments and Cures, Education and Genetic Screening, and care through Nursing School Educational programs.<\/p>\n<p>MFRF has celebrated wonderful progress in education, genetic testing, and gene therapy patient trials for many affected children and families with fatal genetic diseases of the brain<\/p>\n\t\t\t\t\t\t<h3>\n\t\t\t\t<a href=https:\/\/mfrfoundation.org\/latest-release-from-jscreen\/ title=\"latest release from Jscreen\" tabindex=\"0\">latest release from Jscreen<\/a>\t\t\t<\/h3>\n\t\t\t\t\t\t\t\tCLICK HERE TO LEARN MORE&gt;&gt;\n\t\t\t\t\t<a href=\"https:\/\/mfrfoundation.org\/latest-release-from-jscreen\/\" target=\"_self\" rel=\"noopener\">Read More &#8594;<\/a>\t\t\n\t\t\t\t\t\t<h3>\n\t\t\t\t<a href=https:\/\/mfrfoundation.org\/family-driven-development-of-treatments-for-rare-pediatric-neurological-diseases\/ title=\"Family Driven Development of Treatments for Rare Pediatric Neurological Diseases\" tabindex=\"0\">Family Driven Development of Treatments for Rare Pediatric Neurological Diseases<\/a>\t\t\t<\/h3>\n\t\t\t\t\t\t\t\tPublished article in the prestigious Clinical Pharmacology and Therapeutics &#8230;\n\t\t\t\t\t<a href=\"https:\/\/mfrfoundation.org\/family-driven-development-of-treatments-for-rare-pediatric-neurological-diseases\/\" target=\"_self\" rel=\"noopener\">Read More &#8594;<\/a>\t\t\n\t\t\t\t\t\t<h3>\n\t\t\t\t<a href=https:\/\/mfrfoundation.org\/the-year-in-review-summary-2021\/ title=\"The Year in Review summary 2021\" tabindex=\"0\">The Year in Review summary 2021<\/a>\t\t\t<\/h3>\n\t\t\t\t\t\t\t\tThe Year in Review summary 12\/16\/21.\u00a0 https:\/\/conta.cc\/31S4v9J\n\t\t\t\t\t<a href=\"https:\/\/mfrfoundation.org\/the-year-in-review-summary-2021\/\" target=\"_self\" rel=\"noopener\">Read More &#8594;<\/a>\t\t\n\t\t\t\t\t\t<h3>\n\t\t\t\t<a href=https:\/\/mfrfoundation.org\/sio-gene-therapies-announces-positive-interim-safety-and-biomarker-data-from-ongoing-phase\/ title=\"Sio Gene Therapies Announces Positive Interim Safety and Biomarker Data from Ongoing Phase\" tabindex=\"0\">Sio Gene Therapies Announces Positive Interim Safety and Biomarker Data from Ongoing Phase<\/a>\t\t\t<\/h3>\n\t\t\t\t\t\t\t\t&#8220;Sio Gene Therapies Announces Positive Interim Safety and Biomarker &#8230;\n\t\t\t\t\t<a href=\"https:\/\/mfrfoundation.org\/sio-gene-therapies-announces-positive-interim-safety-and-biomarker-data-from-ongoing-phase\/\" target=\"_self\" rel=\"noopener\">Read More &#8594;<\/a>\t\t\n\t\t\t\t\t\t<h3>\n\t\t\t\t<a href=https:\/\/mfrfoundation.org\/sio-gene-therapies-announces-first-patient-dosed-in-clinical-trial-of-axo-aav-gm2-in-patients-with-tay-sachs-and-sandhoff-disease\/ title=\"Sio Gene Therapies Announces First Patient Dosed in Clinical Trial of AXO-AAV-GM2 in Patients with Tay-Sachs and Sandhoff Disease\" tabindex=\"0\">Sio Gene Therapies Announces First Patient Dosed in Clinical Trial of AXO-AAV-GM2 in Patients with Tay-Sachs and Sandhoff Disease<\/a>\t\t\t<\/h3>\n\t\t\t\t\t\t\t\tSio Gene Therapies Announces First Patient Dosed in Clinical &#8230;\n\t\t\t\t\t<a href=\"https:\/\/mfrfoundation.org\/sio-gene-therapies-announces-first-patient-dosed-in-clinical-trial-of-axo-aav-gm2-in-patients-with-tay-sachs-and-sandhoff-disease\/\" target=\"_self\" rel=\"noopener\">Read More &#8594;<\/a>\t\t\n\t\t\t\t\t\t<h3>\n\t\t\t\t<a href=https:\/\/mfrfoundation.org\/taysha-gene-therapies-a-clinical-trial-option-for-children-with-tay-sachs-disease-or-sandhoff\/ title=\"Taysha Gene Therapies &#8220;A Clinical Trial Option for Children with Tay-Sachs Disease or Sandhoff&#8221;\" tabindex=\"0\">Taysha Gene Therapies &#8220;A Clinical Trial Option for Children with Tay-Sachs Disease or Sandhoff&#8221;<\/a>\t\t\t<\/h3>\n\t\t\t\t\t\t\t\tTaysha Gene Therapies &#8220;A Clinical Trial Option for Children &#8230;\n\t\t\t\t\t<a href=\"https:\/\/mfrfoundation.org\/taysha-gene-therapies-a-clinical-trial-option-for-children-with-tay-sachs-disease-or-sandhoff\/\" target=\"_self\" rel=\"noopener\">Read More &#8594;<\/a>\t\t\n\t\t\t\t\t\t<h3>\n\t\t\t\t<a href=https:\/\/mfrfoundation.org\/axovant-gene-therapies-announces-fda-clearance-of-ind-for-axo-aav-gm2-gene-therapy-in-tay-sachs-and-sandhoff-diseases\/ title=\"Axovant Gene Therapies Announces FDA Clearance of IND for AXO-AAV-GM2 Gene Therapy in Tay-Sachs and Sandhoff Diseases\" tabindex=\"0\">Axovant Gene Therapies Announces FDA Clearance of IND for AXO-AAV-GM2 Gene Therapy in Tay-Sachs and Sandhoff Diseases<\/a>\t\t\t<\/h3>\n\t\t\t\t\t\t\t\tAXO-AAV-GM2 is the first investigational gene therapy to receive &#8230;\n\t\t\t\t\t<a href=\"https:\/\/mfrfoundation.org\/axovant-gene-therapies-announces-fda-clearance-of-ind-for-axo-aav-gm2-gene-therapy-in-tay-sachs-and-sandhoff-diseases\/\" target=\"_self\" rel=\"noopener\">Read More &#8594;<\/a>\t\t\n\t\t\t\t\t\t<h3>\n\t\t\t\t<a href=https:\/\/mfrfoundation.org\/team-dad-parenting-series-dad-highlights-program\/ title=\"TEAM DAD Parenting Series: Dad Highlights Program\" tabindex=\"0\">TEAM DAD Parenting Series: Dad Highlights Program<\/a>\t\t\t<\/h3>\n\t\t\t\t\t\t\t\tTEAM DAD Parenting Series: Dad Highlights Program GAME ON &#8230;\n\t\t\t\t\t<a href=\"https:\/\/mfrfoundation.org\/team-dad-parenting-series-dad-highlights-program\/\" target=\"_self\" rel=\"noopener\">Read More &#8594;<\/a>\t\t\n\t\t\t<ul class='page-numbers'>\n\t<li>1<\/li>\n\t<li><a href=\"https:\/\/mfrfoundation.org\/page\/2\/?page_id=7443&#038;fl_builder\">2<\/a><\/li>\n\t<li><a href=\"https:\/\/mfrfoundation.org\/page\/3\/?page_id=7443&#038;fl_builder\">3<\/a><\/li>\n\t<li>&hellip;<\/li>\n\t<li><a href=\"https:\/\/mfrfoundation.org\/page\/7\/?page_id=7443&#038;fl_builder\">7<\/a><\/li>\n\t<li><a href=\"https:\/\/mfrfoundation.org\/page\/2\/?page_id=7443&#038;fl_builder\">Next &raquo;<\/a><\/li>\n<\/ul>\n\t<p>|| OUR STORIES ||<\/p>\n<h2>\n\t\tMFRF has celebrated\n\t<\/h2>\n\t<p>wonderful progress in gene therapy patient trials, education, and genetic testing for many affected children and families with fatal genetic diseases of the brain. Still, there is so much more to do, including earlier detection and expanding treatment availability.<\/p>\n\t\t\t<a href=\"https:\/\/mfrfoundation.org\/2023-gala-donation\/\" target=\"_self\" role=\"button\" rel=\"noopener\">\n\t\t\t\t\t\tMAKE A DIFFERENCE TODAY!\n\t\t\t\t\t<\/a>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t<a href=\"https:\/\/mfrfoundation.org\/evie\/\" target=\"_self\" title=\"Evie\" rel=\"noopener\">\n\t\t\t\t<img decoding=\"async\" src=\"https:\/\/mfrfoundation.org\/wp-content\/uploads\/2021\/12\/24.jpg\" alt=\"\" \/>\n\t\t\t\t<\/a>\n\t\t\t\t\t\t<h3>\n\t\t\t\t<a href=https:\/\/mfrfoundation.org\/evie\/ title=\"Evie\" tabindex=\"0\">Evie<\/a>\t\t\t<\/h3>\n\t\t\t\t\t\t\t\tTo lose her first child, Evie, &#8230;\n\t\t\t\t\t<a href=\"https:\/\/mfrfoundation.org\/evie\/\" target=\"_self\" rel=\"noopener\">Read More &#8594;<\/a>\t\t\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t<a href=\"https:\/\/mfrfoundation.org\/nicholas\/\" target=\"_self\" title=\"Nicholas\" rel=\"noopener\">\n\t\t\t\t<img decoding=\"async\" src=\"https:\/\/mfrfoundation.org\/wp-content\/uploads\/2021\/12\/23.jpg\" alt=\"\" \/>\n\t\t\t\t<\/a>\n\t\t\t\t\t\t<h3>\n\t\t\t\t<a href=https:\/\/mfrfoundation.org\/nicholas\/ title=\"Nicholas\" tabindex=\"0\">Nicholas<\/a>\t\t\t<\/h3>\n\t\t\t\t\t\t\t\tNicholas was unable to produce critical &#8230;\n\t\t\t\t\t<a href=\"https:\/\/mfrfoundation.org\/nicholas\/\" target=\"_self\" rel=\"noopener\">Read More &#8594;<\/a>\t\t\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t<a href=\"https:\/\/mfrfoundation.org\/mathew\/\" target=\"_self\" title=\"Mathew\" rel=\"noopener\">\n\t\t\t\t<img decoding=\"async\" src=\"https:\/\/mfrfoundation.org\/wp-content\/uploads\/2021\/12\/22.jpg\" alt=\"\" \/>\n\t\t\t\t<\/a>\n\t\t\t\t\t\t<h3>\n\t\t\t\t<a href=https:\/\/mfrfoundation.org\/mathew\/ title=\"Mathew\" tabindex=\"0\">Mathew<\/a>\t\t\t<\/h3>\n\t\t\t\t\t\t\t\tMathew was born to Kevin and &#8230;\n\t\t\t\t\t<a href=\"https:\/\/mfrfoundation.org\/mathew\/\" target=\"_self\" rel=\"noopener\">Read More &#8594;<\/a>\t\t\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t<a href=\"https:\/\/mfrfoundation.org\/brooke\/\" target=\"_self\" title=\"Brooke\" rel=\"noopener\">\n\t\t\t\t<img decoding=\"async\" src=\"https:\/\/mfrfoundation.org\/wp-content\/uploads\/2021\/12\/21.jpg\" alt=\"\" \/>\n\t\t\t\t<\/a>\n\t\t\t\t\t\t<h3>\n\t\t\t\t<a href=https:\/\/mfrfoundation.org\/brooke\/ title=\"Brooke\" tabindex=\"0\">Brooke<\/a>\t\t\t<\/h3>\n\t\t\t\t\t\t\t\tBrooke was born in 1996 with &#8230;\n\t\t\t\t\t<a href=\"https:\/\/mfrfoundation.org\/brooke\/\" target=\"_self\" rel=\"noopener\">Read More &#8594;<\/a>\t\t\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t<a href=\"https:\/\/mfrfoundation.org\/william\/\" target=\"_self\" title=\"William\" rel=\"noopener\">\n\t\t\t\t<img decoding=\"async\" src=\"https:\/\/mfrfoundation.org\/wp-content\/uploads\/2021\/12\/20.jpg\" alt=\"\" \/>\n\t\t\t\t<\/a>\n\t\t\t\t\t\t<h3>\n\t\t\t\t<a href=https:\/\/mfrfoundation.org\/william\/ title=\"William\" tabindex=\"0\">William<\/a>\t\t\t<\/h3>\n\t\t\t\t\t\t\t\tBack in 2014, the Marquardt family, &#8230;\n\t\t\t\t\t<a href=\"https:\/\/mfrfoundation.org\/william\/\" target=\"_self\" rel=\"noopener\">Read More &#8594;<\/a>\t\t\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t<a href=\"https:\/\/mfrfoundation.org\/nicole\/\" target=\"_self\" title=\"Nicole\" rel=\"noopener\">\n\t\t\t\t<img decoding=\"async\" src=\"https:\/\/mfrfoundation.org\/wp-content\/uploads\/2021\/12\/19.jpg\" alt=\"\" \/>\n\t\t\t\t<\/a>\n\t\t\t\t\t\t<h3>\n\t\t\t\t<a href=https:\/\/mfrfoundation.org\/nicole\/ title=\"Nicole\" tabindex=\"0\">Nicole<\/a>\t\t\t<\/h3>\n\t\t\t\t\t\t\t\tNicole Friedland was born a long &#8230;\n\t\t\t\t\t<a href=\"https:\/\/mfrfoundation.org\/nicole\/\" target=\"_self\" rel=\"noopener\">Read More &#8594;<\/a>\t\t\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t<a href=\"https:\/\/mfrfoundation.org\/eli\/\" target=\"_self\" title=\"Eli\" rel=\"noopener\">\n\t\t\t\t<img decoding=\"async\" src=\"https:\/\/mfrfoundation.org\/wp-content\/uploads\/2021\/12\/18.jpg\" alt=\"\" \/>\n\t\t\t\t<\/a>\n\t\t\t\t\t\t<h3>\n\t\t\t\t<a href=https:\/\/mfrfoundation.org\/eli\/ title=\"Eli\" tabindex=\"0\">Eli<\/a>\t\t\t<\/h3>\n\t\t\t\t\t\t\t\tEli was deeply loved and cared &#8230;\n\t\t\t\t\t<a href=\"https:\/\/mfrfoundation.org\/eli\/\" target=\"_self\" rel=\"noopener\">Read More &#8594;<\/a>\t\t\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t<a href=\"https:\/\/mfrfoundation.org\/cristian\/\" target=\"_self\" title=\"Cristian\" rel=\"noopener\">\n\t\t\t\t<img decoding=\"async\" src=\"https:\/\/mfrfoundation.org\/wp-content\/uploads\/2021\/12\/16.jpg\" alt=\"\" \/>\n\t\t\t\t<\/a>\n\t\t\t\t\t\t<h3>\n\t\t\t\t<a href=https:\/\/mfrfoundation.org\/cristian\/ title=\"Cristian\" tabindex=\"0\">Cristian<\/a>\t\t\t<\/h3>\n\t\t\t\t\t\t\t\tBorn a healthy and vibrant boy, &#8230;\n\t\t\t\t\t<a href=\"https:\/\/mfrfoundation.org\/cristian\/\" target=\"_self\" rel=\"noopener\">Read More &#8594;<\/a>\t\t\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t<a href=\"https:\/\/mfrfoundation.org\/jordan\/\" target=\"_self\" title=\"Jordan\" rel=\"noopener\">\n\t\t\t\t<img decoding=\"async\" src=\"https:\/\/mfrfoundation.org\/wp-content\/uploads\/2021\/12\/15.jpg\" alt=\"\" \/>\n\t\t\t\t<\/a>\n\t\t\t\t\t\t<h3>\n\t\t\t\t<a href=https:\/\/mfrfoundation.org\/jordan\/ title=\"Jordan\" tabindex=\"0\">Jordan<\/a>\t\t\t<\/h3>\n\t\t\t\t\t\t\t\tOn September 17, 2019, after years &#8230;\n\t\t\t\t\t<a href=\"https:\/\/mfrfoundation.org\/jordan\/\" target=\"_self\" rel=\"noopener\">Read More &#8594;<\/a>\t\t\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t<a href=\"https:\/\/mfrfoundation.org\/welcome-to-cloudways\/\" target=\"_self\" title=\"Kevin Michael\" rel=\"noopener\">\n\t\t\t\t<img decoding=\"async\" src=\"https:\/\/mfrfoundation.org\/wp-content\/uploads\/2021\/12\/14.jpg\" alt=\"\" \/>\n\t\t\t\t<\/a>\n\t\t\t\t\t\t<h3>\n\t\t\t\t<a href=https:\/\/mfrfoundation.org\/welcome-to-cloudways\/ title=\"Kevin Michael\" tabindex=\"0\">Kevin Michael<\/a>\t\t\t<\/h3>\n\t\t\t\t\t\t\t\tKevin Michael Vargas, born to Daniel &#8230;\n\t\t\t\t\t<a href=\"https:\/\/mfrfoundation.org\/welcome-to-cloudways\/\" target=\"_self\" rel=\"noopener\">Read More &#8594;<\/a>\t\t\n\t\t<h3>Ready to make an impact?<\/h3>\n\t\t<p>MFRF has celebrated wonderful progress in gene therapy patient trials, education, and genetic testing for many affected children and families with fatal genetic diseases of the brain. Still, there is so much more to do, including earlier detection and expanding treatment availability.<\/p>\n\t\t\t<a href=\"https:\/\/mfrfoundation.org\/2023-gala-donation\/\" target=\"_self\" role=\"button\" rel=\"noopener\">\n\t\t\t\t\t\tDONATE TODAY!\n\t\t\t\t\t<\/a>\n\n","protected":false},"excerpt":{"rendered":"<p>Media Releases \/\/ Our Focus is Education &#038; Research of Children&#8217;s Genetic Diseases of the Brain MAKE A DIFFERENCE TODAY! MFRF has provided leadership and raised approximately $2.5 million of funding for projects spanning its mission and vision across three pillars: Research of Treatments and Cures, Education and Genetic Screening, and care through Nursing School [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"site-sidebar-layout":"no-sidebar","site-content-layout":"page-builder","ast-site-content-layout":"","site-content-style":"default","site-sidebar-style":"default","ast-global-header-display":"","ast-banner-title-visibility":"","ast-main-header-display":"","ast-hfb-above-header-display":"","ast-hfb-below-header-display":"","ast-hfb-mobile-header-display":"","site-post-title":"disabled","ast-breadcrumbs-content":"","ast-featured-img":"disabled","footer-sml-layout":"","theme-transparent-header-meta":"default","adv-header-id-meta":"","stick-header-meta":"default","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"default","ast-page-background-enabled":"default","ast-page-background-meta":{"desktop":{"background-color":"var(--ast-global-color-4)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-gradient":""},"tablet":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-gradient":""},"mobile":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-gradient":""}},"ast-content-background-meta":{"desktop":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-gradient":""},"tablet":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-gradient":""},"mobile":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-gradient":""}},"footnotes":""},"_links":{"self":[{"href":"https:\/\/mfrfoundation.org\/wp-json\/wp\/v2\/pages\/7443"}],"collection":[{"href":"https:\/\/mfrfoundation.org\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/mfrfoundation.org\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/mfrfoundation.org\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/mfrfoundation.org\/wp-json\/wp\/v2\/comments?post=7443"}],"version-history":[{"count":19,"href":"https:\/\/mfrfoundation.org\/wp-json\/wp\/v2\/pages\/7443\/revisions"}],"predecessor-version":[{"id":8550,"href":"https:\/\/mfrfoundation.org\/wp-json\/wp\/v2\/pages\/7443\/revisions\/8550"}],"wp:attachment":[{"href":"https:\/\/mfrfoundation.org\/wp-json\/wp\/v2\/media?parent=7443"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}