{"id":266,"date":"2018-05-17T17:45:17","date_gmt":"2018-05-17T17:45:17","guid":{"rendered":"http:\/\/www.montclair.edu\/forward-thinking\/?page_id=266"},"modified":"2018-05-29T14:23:43","modified_gmt":"2018-05-29T14:23:43","slug":"when-the-research-is-personal","status":"publish","type":"page","link":"https:\/\/www.montclair.edu\/forward-thinking\/spring-2018\/when-the-research-is-personal\/","title":{"rendered":"When the Research Is Personal"},"content":{"rendered":"<p class=\"p1\">Like any researcher, Assistant Professor of Nutrition and Food Studies Mousumi Bose was thrilled to receive an extension of a National Institutes of Health\u2013 funded training grant from the Sterol and Isoprenoid Research (STAIR) Consortium of the Rare Diseases Clinical Research Network.<\/p>\n<p class=\"p1\">Unlike most researchers, however, Bose uses her work to celebrate the life of a son she lost far too soon.<\/p>\n<p class=\"p1\">Bose was a postdoctoral fellow at Columbia University when she became pregnant with her first son, Ilan, who was born in August 2010 with Zellweger Spectrum Disorder (ZSD), a rare metabolic illness that affects one in 50,000 children.<\/p>\n<p class=\"p1\">Bose was 37 weeks pregnant with her second son, Etash, when Ilan died. \u201cIlan had round-the-clock seizures, low muscle tone and was constantly on oxygen,\u201d she says. \u201cI didn\u2019t know how long he would be with us, so I quit my job and cared for him. He passed away in October 2011.\u201d<\/p>\n<blockquote><p>&ldquo;I have the opportunity to contribute to a better understanding of these kids and make a difference for every family touched by ZSD.&rdquo;<\/p>\n<footer><cite>Mousumi Bose<\/cite><\/footer>\n<\/blockquote>\n<p>Before Ilan was born, she had specialized in the effects of gastric-bypass surgery, but things began to change after she joined an organization for families affected by ZSD, an often fatal peroxisome biogenesis disorder that prevents children from metabolizing specific types of fats.<\/p>\n<p class=\"p1\">\u201cI got involved in advocacy for ZSD,\u201d Bose says. \u201cI joined the Global Foundation for Peroxisomal Disorders board when the secret got out that I had a science background. So I helped establish foundation-funded grant opportunities for researchers and facilitated getting scientists together to study this rare disease.\u201d<\/p>\n<figure class=\"responsive-image-holder wp-caption alignnone\"><img decoding=\"async\" class=\"mlt-responsive-image\" data-original-image=\"\/forward-thinking\/wp-content\/uploads\/sites\/13\/2018\/05\/mousumi-bose.jpg\" src=\"\/responsive-media\/cache\/forward-thinking\/wp-content\/uploads\/sites\/13\/2018\/05\/mousumi-bose.jpg.0.1x.generic.jpg\" alt=\"Mousumi Bose\"\/><figcaption class=\"wp-caption-text\">Mousumi Bose uses her work to celebrate the life of her son, Ilan, pictured behind her.<\/figcaption><\/figure>\n<p class=\"p1\">In 2016, Bose became a full-time professor at 精品成人福利在线 and \u201crealized that I could make a difference by committing myself to working on ZSD research.\u201d The NIH grant allows her to contribute\u00a0to the research goals of STAIR by investigating rare diseases of sterol metabolism, including nutritional aspects of the peroxisome biogenesis disorders.<\/p>\n<p class=\"p1\">\u201cNow that I am into the second phase of this work, thanks to the rare-disease training grant, it gives me the freedom to teach my classes, conduct research and build connections with other foundations in the STAIR consortium,\u201d Bose says.<\/p>\n<p class=\"p1\">The Rare Diseases Act of 2002 led to the creation of the Rare Diseases Clinical Research Network, a group of consortia (including STAIR) that allows researchers to connect with patients and families that, while not large in number, represent a global issue. At present, rare diseases affect about 60 million people in the United States and Europe combined.<\/p>\n<p class=\"p1\">\u201cI had started my research with 30 to 40 families,\u201d Bose says, but \u201cthis grant allows me to get more families involved in the studies.\u201d<\/p>\n<p class=\"p1\">Through it all, Bose has had her husband, Andrew, and children \u2014 Etash, now 6, and Kiran, 3 \u2014 to lean on, which gives her a rare perspective and desire to make a difference.<\/p>\n<p class=\"p1\">\u201cI am not happy that our family went through what we went through,\u201d says Bose, \u201cbut because of that experience and my background in science, I have the opportunity to contribute to a better understanding of these kids and make a difference for every family touched by ZSD.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Like any researcher, Assistant Professor of Nutrition and Food Studies Mousumi Bose was thrilled to receive an extension of a National Institutes of Health\u2013 funded training grant from the Sterol and Isoprenoid Research (STAIR) Consortium of the Rare Diseases Clinical Research Network. Unlike most researchers, however, Bose uses her work to celebrate the life of [&hellip;]<\/p>\n","protected":false},"author":6,"featured_media":11,"parent":247,"menu_order":8,"comment_status":"closed","ping_status":"closed","template":"","meta":{"inline_featured_image":false,"footnotes":""},"class_list":["post-266","page","type-page","status-publish","has-post-thumbnail","hentry"],"_links":{"self":[{"href":"https:\/\/www.montclair.edu\/forward-thinking\/wp-json\/wp\/v2\/pages\/266","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.montclair.edu\/forward-thinking\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.montclair.edu\/forward-thinking\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.montclair.edu\/forward-thinking\/wp-json\/wp\/v2\/users\/6"}],"replies":[{"embeddable":true,"href":"https:\/\/www.montclair.edu\/forward-thinking\/wp-json\/wp\/v2\/comments?post=266"}],"version-history":[{"count":6,"href":"https:\/\/www.montclair.edu\/forward-thinking\/wp-json\/wp\/v2\/pages\/266\/revisions"}],"predecessor-version":[{"id":334,"href":"https:\/\/www.montclair.edu\/forward-thinking\/wp-json\/wp\/v2\/pages\/266\/revisions\/334"}],"up":[{"embeddable":true,"href":"https:\/\/www.montclair.edu\/forward-thinking\/wp-json\/wp\/v2\/pages\/247"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.montclair.edu\/forward-thinking\/wp-json\/wp\/v2\/media\/11"}],"wp:attachment":[{"href":"https:\/\/www.montclair.edu\/forward-thinking\/wp-json\/wp\/v2\/media?parent=266"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}