{"id":33406,"date":"2013-07-02T07:52:01","date_gmt":"2013-07-02T11:52:01","guid":{"rendered":"http:\/\/asweetlife.org\/?post_type=feature&p=33406"},"modified":"2016-01-09T05:21:24","modified_gmt":"2016-01-09T10:21:24","slug":"jdcacuring-type-1-diabetes-by-redefining-cure","status":"publish","type":"post","link":"https:\/\/asweetlife.org\/?p=33406","title":{"rendered":"JDCA: Curing Type 1 Diabetes by Redefining \u201cCure\u201d"},"content":{"rendered":"

\"Juvenile<\/a><\/p>\n

A relatively new organization funded by a wealthy businessman whose son has type 1 diabetes is working to quicken the pace of research into finding a cure for type 1 diabetes. In the process, the group is seeking to redefine what curing type 1 diabetes actually means and how fast it can come about.<\/p>\n

\u201cThere is no question that we are controversial,\u201d says Phil Shaw<\/a>, General Manager of the Juvenile Diabetes Cure Alliance<\/a>. \u201cI think to some degree we are challenging the norm. We\u2019re saying something new. We\u2019re saying to researchers that their research needs to be prioritized to achieve real results in the foreseeable future.\u201d<\/p>\n

The stated mission of the JDCA \u201cis to direct donor contributions to the charitable organizations that most effectively fund research with the goal of delivering a type 1 Practical Cure by 2025.\u201d<\/p>\n

\"Brian<\/a>The organization\u2019s founder, and primary funding source, Brian G. Kelly, developed this mission. Kelly is the director of Activision Blizzard, a gaming company behind such video games as Call of Duty, Spider Man, and many others. After his two-year-old son Tommy was diagnosed with type 1 diabetes, Kelly learned how to help his son manage his condition. Kelly, however, wanted to do more than just know how to administer insulin injections and test his son\u2019s blood sugar levels. He took a look at the progress toward curing type 1 diabetes and realized that in almost every situation research was devoted to an absolute cure. He also noted that a cure was typically promised in the far off future and was not something imminent.<\/p>\n

\u201cWhen we really started to study things, we began to realize that, it\u2019s like, \u2018You know what? There isn\u2019t going to be a cure in the next five years,\u2019\u201d Kelly said in an interview with The Wall Street Journal<\/em><\/a>. \u201cWe started kind of peeling back the different layers of the nonprofit research world.\u201d<\/p>\n

The idea of a \u201cPractical Cure\u201d was the first paradigm shift the JDCA advocated.<\/p>\n

Unlike what the organization calls an \u201cIdealized Cure,\u201d a Practical Cure means making diabetes easier to manage and live with while still minimizing or eliminating complications from the disease. The JDCA defines a Practical Cure as one that enables diabetics to live their lives with blood sugar testing once a week or less; to eat an unrestricted diet; to require only a simple regimen of medication; to sleep worry free; to experience only minimal diabetes side effects; and to experience fast recovery from surgery.<\/p>\n

The JDCA developed these criteria by asking diabetics what they would like to see in a cure. \u201cWe asked people, \u2018What would you like to see in a cure?\u2019\u201d Shaw says. \u201cWhat we found was that people defined a cure as outcomes based and not based on a perfect reversal of the disease. They said to us, \u2018Give me a chance to lead a normal life.\u2019\u201d<\/p>\n

With the definition of a Practical Cure<\/a> in mind, the JDCA studied how many research projects were targeted to finding a Practical Cure. What they found was not very encouraging.<\/p>\n

\u201cOf the 329 type 1 human clinical trials that we examined, only six have the potential to deliver a Practical Cure,\u201d according to a JDCA report in December 2012<\/a>.<\/p>\n

The second paradigm shift advocated by the JDCA regarding the way research was funded and supported included a deadline to show results: 2025.<\/p>\n

\u201c2025 is the most controversial aspect of our organization,\u201d Shaw says. \u201cBut, it\u2019s a goal not a promise. Our goal is to provide a focus. If there is not a focus, and an urgency of a goal date, then you lose focus. If you lose your focus, you won\u2019t come up with a cure.\u201d<\/p>\n

The goal date was not wholly arbitrary, Shaw says. \u201cWe looked at what was in development and we said, \u2018OK. It takes eight to 16 years to go from animal testing to market. Let\u2019s work within that framework.\u2019 The date we propose is the end of the bubble for a wide range of projects.\u201d<\/p>\n

The JDCA\u2019s approach is somewhat controversial because it focuses more on the outcomes and expediency of a research project rather than on the traditional methods of deciding which projects to fund.<\/p>\n

\u201cThe structure now is set up is to examine each project individually on the quality of the science and not so much on its practical application,\u201d Shaw says.<\/p>\n

The JDCA also considers the quality of the science behind each project that promises a Practical Cure, Shaw says. But along with considering the science when deciding which projects to support, the group also adds an additional layer of consideration regarding such matters as whether the project will be applicable and on the market in the foreseeable future and whether such projects will improve the lives of diabetics in a practical sense.<\/p>\n

\u201cThe model for this is how corporations work,\u201d Shaw says. \u201cWe\u2019re not advocating broadly for the corporatization of science. What we\u2019re saying is, let\u2019s use the best practices of the corporate world to direct how funds are invested.\u201d<\/p>\n

All of which begs the question, what does the JDCA do<\/em> exactly to fulfill its mission?<\/p>\n

Shaw says the JDCA advocates and influences donors to contribute to those projects that promise a Practical Cure in the foreseeable future.<\/p>\n

To that end, the organizations monitor the state of research into a Practical Cure though reports it publishes on its website<\/a>. Through these reports it informs donors seeking to support a Practical Cure which research projects best meet that criteria. For instance, on the JDCA website there is a letter donors can use when submitting their money to any organization researching type 1 diabetes that states clearly they want their donation to go specifically toward a project supporting a Practical Cure.<\/p>\n

\u201cWe help donors write a restricted gift,\u201d Shaw says. \u201cWe also work with lawyers who represent larger gifts on how to restrict those gifts to supporting research for a Practical Cure.\u201d<\/p>\n

Shaw adds that, as the JDCA has evolved they have become \u201cmore of an influencing group\u201d than anything else.<\/p>\n

Shaw says the JDCA is not a lobbying organization. \u00a0The 501(c) 3 organization does not rely on donor contributions for support. Kelly, through his family foundation, is the sole financial backer of the JDCA, and has so far contributed more than $1 million since it was founded in\u00a02011<\/a>.”<\/p>\n

\u201cWe want to make positive change,\u201d Shaw says about what the JDCA does. \u201c\u201dWe know there will be some bumps. But, it\u2019s worth stirring things up to get things going.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"

The JDCA defines a Practical Cure as one that enables diabetics to live their lives with blood sugar testing once a week or less; to eat an unrestricted diet; to require only a simple regimen of medication; to sleep worry free; to experience only minimal diabetes side effects; and to experience fast recovery from surgery.<\/p>\n","protected":false},"author":4,"featured_media":33423,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","footnotes":""},"categories":[1429],"tags":[1302],"yoast_head":"\nJDCA: Curing Type 1 Diabetes by Redefining \u201cCure\u201d<\/title>\n<meta name=\"description\" content=\"JDCA is seeking to redefine what curing type 1 diabetes actually means and how fast it can come about.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/asweetlife.org\/?p=33406\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"Alex O\u2019Meara\" \/>\n\t<meta name=\"twitter:label2\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"5 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\/\/asweetlife.org\/?p=33406\",\"url\":\"https:\/\/asweetlife.org\/?p=33406\",\"name\":\"JDCA: Curing Type 1 Diabetes by Redefining \u201cCure\u201d\",\"isPartOf\":{\"@id\":\"https:\/\/asweetlife.org\/#website\"},\"primaryImageOfPage\":{\"@id\":\"https:\/\/asweetlife.org\/?p=33406#primaryimage\"},\"image\":{\"@id\":\"https:\/\/asweetlife.org\/?p=33406#primaryimage\"},\"thumbnailUrl\":\"https:\/\/asweetlife.org\/wp-content\/uploads\/2013\/07\/JDCA-logo-1.jpg\",\"datePublished\":\"2013-07-02T11:52:01+00:00\",\"dateModified\":\"2016-01-09T10:21:24+00:00\",\"author\":{\"@id\":\"https:\/\/asweetlife.org\/#\/schema\/person\/39a63c7215ee072a94bbc4a681de116d\"},\"description\":\"JDCA is seeking to redefine what curing type 1 diabetes actually means and how fast it can come about.\",\"breadcrumb\":{\"@id\":\"https:\/\/asweetlife.org\/?p=33406#breadcrumb\"},\"inLanguage\":\"en-US\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\/\/asweetlife.org\/?p=33406\"]}]},{\"@type\":\"ImageObject\",\"inLanguage\":\"en-US\",\"@id\":\"https:\/\/asweetlife.org\/?p=33406#primaryimage\",\"url\":\"https:\/\/asweetlife.org\/wp-content\/uploads\/2013\/07\/JDCA-logo-1.jpg\",\"contentUrl\":\"https:\/\/asweetlife.org\/wp-content\/uploads\/2013\/07\/JDCA-logo-1.jpg\",\"width\":600,\"height\":400,\"caption\":\"JDCA logo\"},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\/\/asweetlife.org\/?p=33406#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Home\",\"item\":\"https:\/\/asweetlife.org\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"JDCA: Curing Type 1 Diabetes by Redefining \u201cCure\u201d\"}]},{\"@type\":\"WebSite\",\"@id\":\"https:\/\/asweetlife.org\/#website\",\"url\":\"https:\/\/asweetlife.org\/\",\"name\":\"ASweetLife\",\"description\":\"The Diabetes Magazine\",\"potentialAction\":[{\"@type\":\"SearchAction\",\"target\":{\"@type\":\"EntryPoint\",\"urlTemplate\":\"https:\/\/asweetlife.org\/?s={search_term_string}\"},\"query-input\":\"required name=search_term_string\"}],\"inLanguage\":\"en-US\"},{\"@type\":\"Person\",\"@id\":\"https:\/\/asweetlife.org\/#\/schema\/person\/39a63c7215ee072a94bbc4a681de116d\",\"name\":\"Alex O\u2019Meara\",\"image\":{\"@type\":\"ImageObject\",\"inLanguage\":\"en-US\",\"@id\":\"https:\/\/asweetlife.org\/#\/schema\/person\/image\/\",\"url\":\"https:\/\/secure.gravatar.com\/avatar\/d46cda412d65fd79447ff39275a4856e?s=96&d=mm&r=g\",\"contentUrl\":\"https:\/\/secure.gravatar.com\/avatar\/d46cda412d65fd79447ff39275a4856e?s=96&d=mm&r=g\",\"caption\":\"Alex O\u2019Meara\"},\"description\":\"Alex was diagnosed with type 1 diabetes 36 years ago. 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