{"id":1190,"date":"2012-09-18T05:47:30","date_gmt":"2012-09-17T20:47:30","guid":{"rendered":"http:\/\/blog.ebinfoworld.com\/?p=1190"},"modified":"2012-09-18T05:47:30","modified_gmt":"2012-09-17T20:47:30","slug":"the-heart-of-researchfinding-a-cure-for-eb","status":"publish","type":"post","link":"https:\/\/blog.ebinfoworld.com\/?p=1190","title":{"rendered":"The heart of research\u2026finding a cure for EB"},"content":{"rendered":"

By\u00a0Christie Zink<\/em><\/p>\n

From her Blog:\u00a0I\u00a0Refuse EB<\/strong><\/a><\/p>\n

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\"\"Epidermolysis Bullosa\u2026I remember the first time I ever came across those words. \u00a0I did not realize at the time that those words would impact me so profoundly. \u00a0It was late at night and I happened to see the link to a\u00a0blog<\/a>\u00a0on a Facebook page that I had started following a short time earlier. \u00a0There was this beautiful boy\u2026Tripp Roth. \u00a0His mother\u2019s words totally captivated me in a way that I really cannot describe. \u00a0I spent the entire night reading the blog from the very beginning. \u00a0This was the beginning of my journey into advocacy. Naturally I, like many others, scoured the web trying to find out every thing that I could about EB. \u00a0All I really knew at the time was that this was a rare devastating disorder that caused tremendous suffering. \u00a0It had an extremely high mortality rate and there was NO CURE. \u00a0That is right, there is no cure\u2026those two words absolutely broke my \u00a0heart. \u00a0The thought that these children are born with no hope shattered me to my very core. \u00a0No hope\u2026how could that possibly be? What I did not know at the time was that there was hope. \u00a0There was ground breaking research being done to find a cure for EB, and this research, it was being done right here in Minnesota. \u00a0Researchers at the \u00a0University of Minnesota<\/a>\u00a0were conducting clinical trials using adult bone marrow. \u00a0Little by little, they were making a difference in the lives of these precious children, they could save their lives and give them hope for some normalcy. \u00a0At the heart of this research is\u00a0Dr. Jakub Tolar<\/a>\u2026<\/p>\n

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As a pediatric oncologist,\u00a0Jakub Tolar, M.D., Ph.D.<\/a>, sees tragedy every day. But little compares with the heartbreak he sees working with children who have epidermolysis bullosa (EB), a fatal disease that can cause the skin to slough off at even the slightest touch.\u00a0\u201cThis is one of the most awful diseases I\u2019ve ever seen,\u201d Tolar says.\u00a0While missing patches of skin are one of the most outwardly apparent signs of the disease, they\u2019re only part of the complex difficulties these children and their families face.\u00a0With an esophagus full of lesions, it becomes painful to eat. And because of the body\u2019s constant but flawed efforts to repair itself, fingers can fuse together.\u00a0Eventually, usually by age 20, these children will die of skin cancer. But not if Tolar has his way. A member of the\u00a0pioneering University of Minnesota team<\/a>\u00a0offering promising but risky blood and marrow transplants aimed at curing the disease, he is now focused on finding a safer alternative (see sidebar).\u00a0\u201cIt is high-intensity, potentially high-yield, very novel research,\u201d Tolar says.<\/p>\n

Nicole Endres (June\u00a07, 2012) \u00a0Meeting the Challenge from\u00a0http:\/\/blog.lib.umn.edu\/mmf\/news\/givingmatters\/2012\/meeting-the-challenge.html<\/a><\/p>\n<\/blockquote>\n

\"\"<\/a>This research is so\u00a0incredibly\u00a0critical and and it has been a privilege to\u00a0have\u00a0the\u00a0opportunity\u00a0to support Dr. Tolar and his team. \u00a0I can say with the utmost certainty that he is one of the most inspiring people I have ever encountered. \u00a0His genuine compassion for his patients and his dedication to giving them a better life is truly something that is so very rare. \u00a0This goes far beyond doing a job\u2026.this is his life\u2019s work, this is his passion. \u00a0He truly cares about these kids and he wants more than anything to be able to give them a chance. \u00a0 These kids are at the very heart of everything he does. \u00a0Dr. Tolar is continuously striving to make life better for these kids\u00a0despite\u00a0the challenges and setbacks. \u00a0Because of this dedication, tremendous strides are being made and each new day brings them closer to finding a cure. This research relies heavily on grants and donations and this year the Minnesota Medical Foundation at the University of Minnesota was presented with an incredible opportunity by means of a substantial matching grant. \u00a0The\u00a0Epidermolysis Bullosa Medical\u00a0Research\u00a0Foundation<\/a>\u00a0and the\u00a0Jackson Gabriel Silver Foundation<\/a>\u00a0have\u00a0committed\u00a0to contributing up to $450,000, matching gifts from other donors received by December 31, 2012, dollar for dollar. The response to this has been incredible with donations of approximately $325,000, an amount that means a great deal to the entire team at the U of M. \u00a0However there is still $125,000 that can be raised that will be matched! \u00a0If all the dollars are raised, that would mean $900,000 being dedicated to this vital research and that is nothing short of amazing. Just take a look at some of the lives that have already been changed thanks to this program\u2026 (Click on the images to read their story.)<\/p>\n\n\n\n\n
\"\"
\n<\/a>Fallyn<\/td>\n		\"\"
\n<\/a>Daylon<\/td>\n		\"\"
\n<\/a>Charlie<\/td>\n<\/tr>\n
\"\"
\n<\/a>Keric<\/td>\n		\"\"
\n<\/a>Payton<\/td>\n<\/tr>\n<\/tbody>\n<\/table>\n

I find myself looking at these precious faces and seeing the light in their eyes, the joy and the happiness. Then I imagine their life before their transplant, I imagine the suffering that these children were forced to endure and the frustration and sadness of their parents when faced with this reality. \u00a0No child should ever have to endure the pain of EB and no parent should have to watch as EB ravages their child inside and out.\u00a0Every child deserves hope, it is a beautiful gift and it is now a reality for kids with EB thanks to this very special team. \u00a0I hope that you will join me in supporting Dr. Tolar and fighting for a cure\u2026providing hope where once there was none. \u00a0 If you would like to show your support you can make a one time donation or an ongoing pledge through\u00a0Pioneering Unique Cures for Kids<\/a>, an organization dedicated to raising funds for this vital research. \u00a0To donate, click\u00a0HERE<\/a>\u00a0\u00a0Remember, every dollar counts TWICE! \u00a0Thank you for helping make a difference and helping to end the needless suffering that is caused by EB.<\/p>\n

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Christie Zink<\/a><\/div>\n

Hello, I am a wife, mother, photographer and advocate. I have been blessed with an incredible opportunity to use my creative passion as a business and as a way to bring joy into the lives of others. Through the art of photography, I am able to capture special moments in time creating an invaluable keepsake.<\/p>\n

In my life, I have always had a strong desire to make a difference some how. I started This Little Light as a way to help families who were dealing with a catastrophic or life altering diagnosis or infant loss in hopes that I would be able to provide them with a way to honor their child.<\/p>\n

I have discovered that this endeavor is far beyond just taking pictures. Each of these families is giving me a gift by inviting me in to capture some of the most intimate moments, moments that are rarely seen by others. Allowing me to bond with their child, a connection that is quite indescribable. I am forever blessed that these families allow me to be a part of their journey. It is a <\/p>\n

\"Facebook\"<\/a> \"Twitter\"<\/a> \"Google+\"<\/a> \"YouTube\"<\/a> <\/p>\n<\/p><\/div>\n

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<\/p>\n<\/div>\n","protected":false},"excerpt":{"rendered":"

By\u00a0Christie Zink From her Blog:\u00a0I\u00a0Refuse EB *************************** Epidermolysis Bullosa\u2026I remember the first time I ever came across those words. \u00a0I did not realize at the time that those words would impact me so profoundly. \u00a0It was late at night and I happened to see the link to a\u00a0blog\u00a0on a Facebook page that I had started…<\/p>\n

Read More<\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[57],"tags":[94,115,62,111,116],"class_list":["post-1190","post","type-post","status-publish","format-standard","hentry","category-blog","tag-bone-marrow-transplants","tag-dr-tolar","tag-ebmrf","tag-guest-blogger-christie","tag-puck"],"_links":{"self":[{"href":"https:\/\/blog.ebinfoworld.com\/index.php?rest_route=\/wp\/v2\/posts\/1190","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/blog.ebinfoworld.com\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/blog.ebinfoworld.com\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/blog.ebinfoworld.com\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/blog.ebinfoworld.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=1190"}],"version-history":[{"count":4,"href":"https:\/\/blog.ebinfoworld.com\/index.php?rest_route=\/wp\/v2\/posts\/1190\/revisions"}],"predecessor-version":[{"id":1195,"href":"https:\/\/blog.ebinfoworld.com\/index.php?rest_route=\/wp\/v2\/posts\/1190\/revisions\/1195"}],"wp:attachment":[{"href":"https:\/\/blog.ebinfoworld.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=1190"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/blog.ebinfoworld.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=1190"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/blog.ebinfoworld.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=1190"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}