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Beamer freshman Nate Clow: ‘It’s not really worth hiding’ from his disease, ulcerative colitis – The Seattle Times

Posted: Published on May 12th, 2017

Not even through his first year of high-school baseball, Nate Clow has already committed to Washington. Theres just something about baseball. At age 2, Nate Clow attended his first Mariners game and sat in the stands without speaking or fidgeting, watching the entire game. By middle school, his bedroom was covered with every MLB teams pennant, photos of legends and an embarrassing amount of Ichiro bobblehead dolls. Now a freshman at Todd Beamer, Clow turned the passion into a starting spot on the varsity baseball team. Arizona Diamondbacks infielder Jake Lamb is a favorite player, Clow studying the swing of the fellow lefty from Seattle before every game. Lately, another player has become a favorite of Clows Texas Rangers relief pitcher Jake Diekman. Odd for Clow, a hitter so skilled he verbally committed to the University of Washington just as Lamb did. But what you cant tell about Clow is he suffers from ulcerative colitis, an inflammatory bowel disease where the bodys own immune system attacks the normal gut bacteria in the large intestine, causing inflammation and ulcerations. In 2015, Diekman publicly acknowledged his 19-year battle with the incurable disease. When Im in a flare (up), I know hes gone … Continue reading

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Tofacitinib effective as induction and maintenance therapy for ulcerative colitis – 2 Minute Medicine

Posted: Published on May 12th, 2017

1. Patients with active ulcerative colitis who failed prior treatment achieved significantly greater remission of disease and mucosal healing compared to those treated with placebo. 2. Remission of ulcerative colitis symptoms over 1 year was significantly greater for patients who initially responded to tofacitinib and continued therapy compared to patients who responded and then were treated with a placebo. Evidence Rating: 1 (Excellent) Study Rundown: Ulcerative colitis is an inflammatory condition of the colon. The condition is difficult to treat despite an array of therapies available. Janus kinase (JAK) receptors are involved in many intracellular immune pathways associated with inflammatory bowel disease, therefore JAK inhibitors may prove useful in treatment of ulcerative colitis. Prior phase 2 trials indicated tofacitinib, a JAK inhibitor, can induce remission of ulcerative colitis. In three phase 3 trials, tofacitinib was further evaluated as an induction and maintenance treatment for patients with ulcerative colitis. The studies randomized patients with moderate to severe active ulcerative colitis into treatment and placebo groups. In the first 2 studies (OCTAVE 1 and 2), patients received 10 mg of tofacitinib twice a day or a placebo for 8 weeks. At 8 weeks, treated patients were significantly more likely to have achieved … Continue reading

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New Preclinical Data Support SGT-001 As A Novel Treatment … – Business Wire (press release)

Posted: Published on May 12th, 2017

CAMBRIDGE, Mass.--(BUSINESS WIRE)--Solid Biosciences announced today that new data from two preclinical studies reinforce the potential of its investigational microdystrophin gene therapy, SGT-001, to be an effective treatment approach for Duchenne muscular dystrophy (DMD). The preclinical data, which were presented at the American Society of Gene and Cell Therapy (ASGCT) 20th Annual Meeting, demonstrated that a single administration of SGT-001 resulted in sustained and significant microdystrophin expression and improvements in muscle function, with no observed immune response. The Company plans to initiate clinical trials for SGT-001 in the second half of 2017. These preclinical data show the potential efficacy, durability and tolerability of SGT-001, and give us further confidence in our plan to initiate our clinical program later this year, said Joel Schneider, Ph.D., vice president of Research and Development at Solid Biosciences. I would like to thank our academic partners for their work to help us build one of the most robust gene therapy preclinical datasets in DMD and for sharing our mission to bring meaningful treatments to patients with this devastating disease. Data from the studies were presented by Solids collaborators at the University of Missouri and Texas A&M University in two posters: In both studies, administration of … Continue reading

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Bradley County Fire Department kicks off Fill the Boot for muscular … – WTVC

Posted: Published on May 12th, 2017

Bradley County Fire Department kicks off "Fill the Boot" for muscular dystrophy (Photo: WTVC) The Bradley County Fire Department is kicking off it's annual Fill the Boot campaign for the Muscular Dystrophy Association to help kids and adults suffering from muscular dystrophy, ALS and other related muscle-debilitating diseases. Their goal is to help them live longer and grow stronger. More than 65 firefighters from the BCFD will hit the streets and storefronts with boots in hand to ask for donations on May 11th, 12th, and 13th from 9 am to 9 pm. You can find firefighters at the Walmart on McGrady Dr in Cleveland, the Walmart on Paul Huff Pkwy in Cleveland, and at Station 9 off Hwy 11 in Charleston, TN. Contributions from the campaign help fund research and life-enhancing programs such as state-of-the-art support groups and Care Centers, including the MDA Care Center at Vanderbilt University Medical Center in Nashville. They also help send more than 80 local kids to the best week of the year at MDA summer camp at Camp Widjiwagan in Nashville. The summer camp is no cost to their families. We are thrilled to be working with the Bradley County Fire Department for another … Continue reading

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What is Cerebral Palsy? – ABC10

Posted: Published on May 12th, 2017

Irene paid a visit to an ABC10 super fan who surfers from Cerebral Palsy. Taylor Sands, KXTV 2:16 PM. PDT May 11, 2017 New technology could help you control computers with your thoughts. (Photo: (Photo: Photo Disc)) It may not seem like it, but cerebral palsy is a pretty common disorder. According to the Center for Disease Control, about one in 323 children have been diagnosed with CP. Usually diagnosed at birth, Cerebral palsy is considered a neurological disorder caused by a non-progressive brain injury or defect that happens while a childs brain is under development. It primarily affects the movement of limbs and muscle coordination, meaning that muscles can be too stiff or too loose. Many children with Cerebral palsy can walk independently, but almost 43% of children with CP have trouble or no walking abilities. Also, movement may not be the only issue when it comes to Cerebral palsy. Other symptoms can be speech issues, seizures and even hearing loss. Unfortunately, there is no cure for Cerebral palsy and can be a lifelong disorder, but it can be managed through proper therapy, surgeries and medication. Luckily, there is an organization that offers a lot of help. United Cerebral … Continue reading

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Cerebral Palsy patient dictates autobiography – Community journal

Posted: Published on May 12th, 2017

Paula Hardy is wheelchair-bound because of Cerebral Palsy, but has beat all her doctors expectations by living and learning, with help, to her early 60s. While she couldnt use a typewriter or computer to write her life story herself, she spent two years dictating her story to a small group of friends. Paulas Story is now in print and a best seller of sorts among the residents and staff at Hilltop Village, and her friends. Hardy was the center of attention recently at an in-house book sale and signing party, greeting friends and, after some advance practice, hand-writing her own signature in each book. One reason I wrote the book was, I wanted to honor my parents who were an integral part of my life. They wanted me to be as self-reliant and independent as possible, Hardy said. And the second reason was, I wanted people to better understand about Cerebral Palsy. People misunderstand and think we dont have it up here, she said, pointing to her head, and we do. But it took me two years. She wrote about her parents in the dedication, They inspired me to maintain a positive attitude which enabled me to be encouraging and … Continue reading

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Fan diagnosed with cerebral palsy finally gets to meet his hero: Chuck Norris – Idaho State Journal

Posted: Published on May 12th, 2017

Millville, Utah resident Brian Bills, 27, was diagnosed with cerebral palsy when he was 13 months old. A fan of Chuck Norris as a kid, despite his limitations, he would impersonate martial arts moves in the actors movies and television shows. I had CP, I couldnt walk and I started moving a lot faster when I saw him, Bills said. Now, I can pretty much move on my own. I have some extra support. Bills got a chance to fulfill a longtime dream on Wednesday afternoon and meet Norris, who was at the Maverik gas station and convenience store on 304 S. Main Street, Logan, for a promotional event. Story continues below video It was quite awesome, Bills said. I didnt expect him to hug me and take extra time. Twenty one years in the making, and I finally did it. Bills and his family were just a few of the many people who rounded the block on 300 South and 100 East to meet Norris. For Norris, meeting die-hard fans never gets old. For me, at my age, being out of the film industry for so long, that the people still know who I am, its a blessing for … Continue reading

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Cerebral palsy SDR surgery call for Wales – BBC News – BBC News

Posted: Published on May 12th, 2017

BBC News Cerebral palsy SDR surgery call for Wales - BBC News BBC News The family of a boy with cerebral palsy who paid 55,000 for a specialist operation in the US want it made available on the NHS in Wales. Ifan Thomas, four, from ... and more » Read the original post: Cerebral palsy SDR surgery call for Wales - BBC News - BBC News … Continue reading

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Heartfelt Mother’s Day tribute from Scarborough teen with cerebral palsy – insideTORONTO.com

Posted: Published on May 12th, 2017

insideTORONTO.com Heartfelt Mother's Day tribute from Scarborough teen with cerebral palsy insideTORONTO.com At eight months old, Wesley was diagnosed with cerebral palsy. From the time he was 18 months old, he has been a patient of Toronto's Holland Bloorview Kids Rehabilitation Hospital and became its ambassador at age 10. Wesley has spastic diplegia, ... See more here: Heartfelt Mother's Day tribute from Scarborough teen with cerebral palsy - insideTORONTO.com … Continue reading

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Man with cerebral palsy forbidden from returning to longtime county group home – Loudoun Times-Mirror

Posted: Published on May 12th, 2017

For more than a month, 45-year-old Alex Scott, who has cerebral palsy, was forced to stay at Inova Hospital in Lansdowne after the county would not allow him to return to his group home of 23 years in Sterling without a feeding tube. Since Scotts longtime caregiver at the county-run Kentwell Group Home left in 2014, Scott's family claims the county through the facilitys new caregiver has engaged in an ongoing pattern of discrimination against him because of his disability. Loudoun, through its authorized agents, have committed several acts of discrimination against Alex designed to either force him to obtain a feeding tube or to deny him access to the housing available to him at Kentwell, notes a complaint filed in Circuit Court by the familys attorney, Leesburg-based John Whitbeck. On May 5, Scott and his family landed a slight victory at an emergency hearing after they filed an emergency injunction against the county to return Scott home. Although a Loudoun judge denied his familys request to quickly return Scott to his group home, the judge ordered Kentwell Group Home staff to undergo training over the next two weeks in hopes of eventually bringing Scott back. The hearing came after … Continue reading

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