LEADER 02473pam 2200181 a 4500
001 893723
005 20181210092822.0
008 181226s2017 nyu g b 000 0deng
010 $a 2017950994
020 $a9780692928998 (hbk.) :$cNT$908
040 $aTWTNM$beng$dTWTNM
050 00$aRC600$b.J328 2017
082 04$a362.196978$222
100 1 $aJackson, Victoria,$eauthor.
245 14$aThe power of rare :$ba blueprint for a medical revolution /$cVictoria Jackson ; with Dr. Michael Yeaman.
250 $aFirst Villabella Press edition.
260 $aNew York, NY :$bVillabella Press,$c2017.
300 $axxii, 248 p. ;$c24 cm.
504 $aIncludes bibliographical references (pages 243-248).
520 $aThe Power of Rare is equal parts science and inspiration. In her urgent drive to help her daughter, Victoria Jackson not only transformed the competitive world of biomedical research, but also created a new medical model for generations to come." --Arianna Huffington Victoria Jackson revolutionized the beauty industry in the 1980s and '90s with her "no make-up" approach to make-up and ultimately made Victoria Jackson Cosmetics into a billion-dollar global brand. But her greatest test of the power of rare didn't come until her daughter, Ali, was diagnosed with neuromyelitis optica, or NMO--a rare, life-threatening autoimmune disease--and Victoria, driven by a mother's love, set out to find a cure for herdaughter. Within days of hearing Ali's diagnosis in 2008, Victoria began the Guthy-Jackson Charitable Foundation to fund medical research into this often misdiagnosed orphan disease. Her "blueprint" called for breaking down the so-called silos of traditional medical research and bringing together some of the greatest minds to collaborate and share their findings. She hadn't expected to galvanize how medical research works, but within only a few years, that's just what she did. By focusing on the "rare" in each of us, the foundation has catalyzed breakthroughs in NMO in record time. These advances are also opening new doors to solving MS, lupus, and other autoimmune diseases--plus diseases that are not so rare,including cancer, infection, aging, and more. It has been Victoria's guiding philosophy that if she can do it, anyone can. With The Power of Rare, she shares how the foundation harnessed the power of rare to speed discoveries that help patients. Through her business savvy, wit, and heart, she offers real-world advice and inspiration for others to tap into "rare" to empower their own breakthroughs. --$cPublisher description.
600 10$aJackson, Victoria.
650 0$aAutoimmune diseases.
650 0$aMedicine$xResearch.
650 0$aChronic diseases$xTreatment.
650 0$aChronic diseases$xDiagnosis.
650 0$aRare diseases$xResearch.
650 0$aParents of children with disabilities$vBiography.
650 0$aRare diseases$xPatients.
700 1 $aYeaman, Micahel,$eauthor.