{"id":119,"date":"2021-12-13T13:47:38","date_gmt":"2021-12-13T13:47:38","guid":{"rendered":"https:\/\/mfrfoundation.org\/?page_id=119"},"modified":"2023-12-20T18:46:35","modified_gmt":"2023-12-20T18:46:35","slug":"leadership","status":"publish","type":"page","link":"https:\/\/mfrfoundation.org\/leadership\/","title":{"rendered":"Leadership"},"content":{"rendered":"\n<h2>\n\t\tLEADERSHIP \/\/\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<h2>\n\t\tOfficers and Board of Directors\n\t<\/h2>\n\t<p><strong>Kevin Romer*<\/strong><\/p>\n<ul>\n<li>President, Mathew Forbes Romer Foundation<\/li>\n<li>Vice-President: Certara Simcyp Biosimulation Division<\/li>\n<li>Managing Member of A.J.M. Bio Consulting<\/li>\n<li>Past-President: National Tay-Sachs and Allied Diseases Association<\/li>\n<\/ul>\n\t<p><strong>Lisajane Romer*<\/strong><\/p>\n<ul>\n<li>Secretary \/ Treasurer, Mathew Forbes Romer Foundation<\/li>\n<li>Sr. Product Manager for Motorola Solutions<\/li>\n<li>Secretary, National Tay-Sachs and Allied Diseases Association<\/li>\n<\/ul>\n<h4>Linda Meran. Esq.<\/h4>\n<p>Vice President of Community Outreach<\/p>\n\t<p><strong>Carl Meyers**<\/strong><\/p>\n<ul>\n<li>VP Growth &amp; Development<\/li>\n<li>Former President, Corporate Media Communications, Inc., NYC;<\/li>\n<li>Former VP Broadcasting, National Hockey League &amp; Services, NYC<\/li>\n<\/ul>\n<h4>Monica Gettleman<\/h4>\n<p>Past Director of Family Services, National Tay-Sachs and Allied Diseases<\/p>\n<h4>Pablo Meles, Esq.<\/h4>\n<p>Pablo Meles P.A. Intellectual Property and Technology Law<\/p>\n<h4>Carole Romer<\/h4>\n<p>Former Vice President of B&#8217;nai B&#8217;rith Women International<\/p>\n<h4>Allan Spiro<\/h4>\n<p>Team Leader Keller Williams<\/p>\n\t<p><strong>Edward M. Yorke, Esq.**<\/strong><\/p>\n<ul>\n<li>Former Managing Director Lazard, Ltd.<\/li>\n<li>Member, Board of Trustees, Hospital for\u00a0Special\u00a0Surgeries, NY<\/li>\n<\/ul>\n<h4>Richard Gold, Emeritus<\/h4>\n<p>Former Executive Vice President, Promise Healthcare Corporation<\/p>\n<h4>Larry Lemanski, PhD, Emeritus<\/h4>\n<p>Provost and Vice President for Academic Affairs, Texas A&amp;M University<\/p>\n<h4>Lois Siegel *, Emeritus<\/h4>\n<h2>\n\t\tMedical \/ Scientific Advisory Board\n\t<\/h2>\n<h4>Mislen Bauer, MD, FACMG<\/h4>\n<p>Director, Medical Genetics Miami Children&#8217;s Hospital<\/p>\n<h4>Richard Bennett, DO, FAPP<\/h4>\n<p>Partner, Pediatric Associates<\/p>\n\t<p><strong>R. Rodney Howell, MD, FAAP, FACMG<\/strong><\/p>\n<ul>\n<li>Emeritus professor and chairman of pediatrics<\/li>\n<li>Emeritus member of the Hussman Institute for Human Genomics at the<\/li>\n<li>University of Miami Miller School of Medicine<\/li>\n<li>Founding chair of the congressionally-mandated Secretary&#8217;s Advisory Committee on Heritable Disorders in Newborns and Children<\/li>\n<\/ul>\n<h4>Marcella M. Rutherford, Ph.D., M.B.A., M.S.N., R.N<\/h4>\n<p>Dean of the Nova Southeastern University Ron and Kathy Assaf College of Nursing<\/p>\n<h4>Marlaine C. Smith, RN, Ph.D.,AHN-BC, FAAN<\/h4>\n<p>Former Dean of the Chrstine E. Lynn College of Nursing, Florida Atlantic University<\/p>\n<h4>Neal Weinreb, MD<\/h4>\n<p>Director, University Research Foundation for Lysosomal storage Diseases<\/p>\n<h4>Anne Boynkin, Ph.D.<\/h4>\n<p>Emeritus<\/p>\n<h4>Stuart Horowitz, Ph.D.<\/h4>\n<p>Emeritus<\/p>\n<h4>Shane Palmer, MS, CGC<\/h4>\n<p>Emeritus<\/p>\n<h4>Anwar Vardag, MD<\/h4>\n<p>Emeritus<\/p>\n<h2>\n\t\tAdvisory Board\n\t<\/h2>\n<h4>Lori Baron<\/h4>\n<p>CEO of Baron Delivery on Demand<\/p>\n<h4>Joan Deoul, Esq.<\/h4>\n<p>Retired global contracts attorney<\/p>\n<h4>Neil Eisenband, CPA<\/h4>\n<h4>Dorie Grizzard*<\/h4>\n<h4>Fmr. Congressman Ron Klein, Esq.<\/h4>\n<p>Partner Holland &amp; Knight Law Firm<\/p>\n<h4>Judy Levis Krug<\/h4>\n<h4>Rabbi Dan Levin<\/h4>\n<p>Senior Rabbi Temple Beth El of Boca Raton<\/p>\n<h4>Oralea Marquardt<\/h4>\n<ul>\n<li>President of National Tay-Sachs and Allied Diseases<\/li>\n<li>Masters of Social Work and Youth Grief Counselor<\/li>\n<\/ul>\n<h4>Lisa Math B.S.,CRPS-F<\/h4>\n<p>Co-Director, Family S.T.A.R. &amp; United Families for Children&#8217;s Mental Health Network Family Network on Disabilities<\/p>\n<h4>Jeff Romer<\/h4>\n<p>Business Development at Adobe<\/p>\n<h2>\n\t\tHonorary Board\n\t<\/h2>\n\t<h4>Karen Bomber<\/h4>\n<h4>Amy Brand<\/h4>\n<h4>Victoria Bronfman<\/h4>\n<h4>Matt Cave<\/h4>\n<h4>Walter Collins<\/h4>\n<h4>Chris Dardet<\/h4>\n<h4>Frank Friedland*<\/h4>\n<h4>Shelley Friedland*<\/h4>\n\t<h4>Carly Gettleman<\/h4>\n<h4>Cliff Marks<\/h4>\n<h4>Eli Math<\/h4>\n<h4>Harry Meran**<\/h4>\n<h4>Ellen Meyers<\/h4>\n<h4>Roberta Meyers**<\/h4>\n<h4>Bob Nichols<\/h4>\n<h4>Jill Morgenstein<\/h4>\n\t<h4>Janet Oppenheimer<\/h4>\n<h4>Richard Robbins, MD<\/h4>\n<h4>Ellie Robbins<\/h4>\n<h4>Neal Roher, Esq.<\/h4>\n<h4>Alexis Romer<\/h4>\n<h4>Mindy Romer<\/h4>\n<h4>William Romer**<\/h4>\n\t<h4>Steve Rosner<\/h4>\n<h4>Eric Schiffer<\/h4>\n<h4>Eileen Segal<\/h4>\n<h4>Mike Siegel<\/h4>\n<h4>Tara Siegel<\/h4>\n<h4>Daniel Vargas*<\/h4>\n<h4>Jamie Weinstein<\/h4>\n<h4>*affected families<br \/>\n**deceased<\/h4>\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>LEADERSHIP \/\/ 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 Educational [&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\/119"}],"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=119"}],"version-history":[{"count":31,"href":"https:\/\/mfrfoundation.org\/wp-json\/wp\/v2\/pages\/119\/revisions"}],"predecessor-version":[{"id":8546,"href":"https:\/\/mfrfoundation.org\/wp-json\/wp\/v2\/pages\/119\/revisions\/8546"}],"wp:attachment":[{"href":"https:\/\/mfrfoundation.org\/wp-json\/wp\/v2\/media?parent=119"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}