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Push To Fast Track Drug To Help Children With Deadly Disorder

Posted: Published on March 21st, 2014

By Jennifer Jarrell Thursday March 20, 2014 11:37 PM UPDATED: Friday March 21, 2014 12:48 AM COLUMBUS, Ohio - It's a deadly disease without a cure, but researchers say they have a drug that slows the progression. Now, families of boys with a rare form of muscular dystrophy are pushing for government approval. 7-year-old Jackson Maynard can play football with his big brother right now, but he likely won't be able to in a few years. "He's starting to fall a lot at school, and he has difficulty getting up and down the steps," Jackson's mother, Kelly Maynard, said. Maynard said her son was diagnosed with Duchenne Muscular Dystrophy two years ago. She said her little boy is losing strength every day. "Boys are usually in a wheelchair by the time they are 10 or 12. It is a 100% fatal disease, most boys don't live past their 20s with this disease," Maynard said. Researchers, including a doctor from Nationwide Children's Hospital in Columbus, recently went to Washington to testify on behalf of the drug Eteplirsen. Dr. Jerry Mendell said the drug works. Maynard isn't able to give the drug to her son because it still hasn't been approved by … Continue reading

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Can epilepsy be treated solely with medication? (Christopher Anderson, MD) – Video

Posted: Published on March 21st, 2014

Can epilepsy be treated solely with medication? (Christopher Anderson, MD) Christopher Anderson, MD, neurologist, discusses how epilepsy medications can be used alone or as part of a larger treatment plan. Dr. Anderson is part of th... By: Froedtert the Medical College of Wisconsin … Continue reading

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Family relocates for medical marijuana treatment

Posted: Published on March 21st, 2014

A growing number of local families are heading to Colorado to get a unique medical marijuana treatment for their children who suffer from epilepsy. Ryan Reed and his wife Kathy felt like they were nearly out of options for their 2-and-half-year-old son Otis who has a catastrophic form of epilepsy. The Baldwin City, Kan., couple takes turns staying up with their son who has more than 100 seizures per day. "We've tried everything and there was never any sort of reduction in seizures," Kathy said. Several of the medications caused him to have high blood pressure and more severe seizures. "I'm scared of more seizures. I'm scared of not doing anything and having seizures just completely take over," Ryan said. Doctors finally suggested a risky surgery to remove more than half of Otis brain. Doctors told the Reed family there was only a 50 percent chance of success. The Reeds felt they needed to try one more option before they said yes to the surgery. The options are lets take out half of his brain which might help or might not or lets try one more treatment. Lets try medical marijuana," Ryan said. Within the last year, Ryan and Kathy … Continue reading

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Local mom: Autism treatment more controversial than marijuana

Posted: Published on March 21st, 2014

GEORGIA - Thursday is the last day of the Georgia legislative session, and lawmakers have until midnight to tackle some pretty big issues. Right now the Kid Care Act, as it stands, is the combination of cannabis oil legalization and a mandate for autism insurance. Many lawmakers want to strip the bill of the autism language. It's a fight that supporters have taken to the capitol for the last five years. Melissa Solares, a local mom has been along for the ride since the session started in January, "Had somebody told me that in Georgia, autism treatment would be more controversial than marijuana, I would have laughed, but here we are and that's what happened." Solares is a mother two. Her older son, Arturo has autism. He has made great progress due to Applied Behavioral Analysis. The family pays out of pocket for his ABA because insurance providers right now are not required to cover the therapy. Morgan Kendrick, president of Blue Cross Blue Shield of Georgia, says he supports the treatment, just not a mandate requiring coverage, "It's in the fact that we're taking a fiscally responsible position on how does a mandate affect overarching cost, and our overwhelming … Continue reading

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Waiting Lists too Long for Children with Autism: Parents

Posted: Published on March 21st, 2014

Parents with children awaiting autism diagnosis and treatment say waiting lists are too long and access to the private system is not necessarily a viable option. There are private practices which offer speech pathology and occupational therapy for children diagnosed with autism, but those services can prove too expensive for some. That's according to Ed Knox of Families for Effective Autism Treatment, who says the waiting list for diagnosis and treatment in this province through the public system is between two and three years. One parent says she had to leave the province for Nova Scotia to diagnose her two-year old, otherwise the child would have been close to school age before seeing a doctor. Knox says the private system is one option, but not all parents can avail of it, even after a child is diagnosed. He says some parents can't afford private care, while others are forced to give up work because they have to deal with the issues facing their children. Parents have a rally planned at Confederation Building April 2nd. Go here to see the original: Waiting Lists too Long for Children with Autism: Parents … Continue reading

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NJIT and WebTeam to develop tactile-friendly learning devices for children with autism

Posted: Published on March 21st, 2014

PUBLIC RELEASE DATE: 20-Mar-2014 Contact: Tracey Regan 201-388-0232 New Jersey Institute of Technology New Jersey Institute of Technology and WebTeam Corporation, a New Jersey-based IT company, have signed an agreement to collaboratively design and develop a customizable learning device that will help children with autism spectrum disorder master a range of skills-building lessons contained in the device's embedded educational software. For the initial project, an NJIT team, including students, will work with WebTeam to develop a tactile-friendly 3D device with embedded sensors to interface with the company's iLearNNEarn2 program, which is a part of the ColorsKit package for autism management and a gaming model that uses touchscreen kiosks and mobile devices to deliver evidence-based learning sessions. The sensor-embedded device would prompt the child through the sessions, monitor responsiveness, assess cognition, and adapt future learning sessions accordingly. The device would record the related data, allowing others involved in the child's intervention to share and review it. The device's outer form would vary; for young children, for example, it might be a toy with which they are familiar and include personalized images such as pictures of their rooms. The educational sessions are based on a curriculum developed by Eden Autism Services, a … Continue reading

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House nudging forward with autism insurance mandate

Posted: Published on March 21st, 2014

The House overwhelmingly advanced a bill Thursday containing a mandate that insurance companies operating in Kansas include in health policies the diagnosis and treatment of autistic children. A coalition of lawmakers and parents worked for years to gain traction with legislation requiring state-regulated insurance companies to extend coverage for autism but ran into a wall of opposition from the politically influential industry. Coverage written into House Bill 2744 was described by proponents as a delicate compromise among vested interests and characterized by opponents as a regulatory intrusion that went beyond requirements of the federal Affordable Care Act, also known as Obamacare. "This is important public policy," said Rep. John Rubin, a Shawnee Republican pivotal in negotiations on the bill. "It's the right thing to do." Rep. Don Hill, D-Emporia, said hours of treatment for each child required by the House bill set for a final vote Friday provided an important platform for improving services to the estimated 8,400 Kansas children with autism. "This doesn't go really as far as a great majority wish it could," he said. "It's a big step in the right direction." Autism is a complex disorder of brain development commonly characterized by repetitive behaviors, difficulties in … Continue reading

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Most Women Don't Know Warning Signs of Stroke: Study

Posted: Published on March 21st, 2014

By Mary Brophy Marcus HealthDay Reporter WEDNESDAY, March 19, 2014 (HealthDay News) -- Most women say they'd call 911 if they were experiencing a stroke, but many don't recognize the major warning signs of stroke, new research shows. The study authors surveyed more than 1,200 women in the United States to assess their understanding of stroke's warning signs. "We saw a high level of knowledge to call 911 when a stroke occurs," said study author Dr. Heidi Mochari-Greenberger, an associate research scientist of preventive cardiology at Columbia University Medical Center in New York City. Eighty-four percent of women know to dial for an ambulance if a stroke hits. But the good news stopped there, Mochari-Greenberger noted. Only 51 percent of the women knew that sudden weakness or numbness on one side of the face, arms or legs is a warning sign of a stroke. Less than half (44 percent) knew that speech difficulty is a stroke sign. Fewer than one-quarter of the women could identify the following as other top stroke signs: sudden severe headache (23 percent), unexplained dizziness (20 percent), and sudden vision loss or vision loss in one eye (18 percent). "The results suggest that efforts to improve … Continue reading

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Surgery after major stroke also improves survival odds in elderly patients

Posted: Published on March 21st, 2014

atients who are over the age of 60 and have suffered a major stroke due to blockage of the middle cerebral artery benefit from hemicraniectomy -- removal of part of the skull located above the affected brain tissue. The procedure relieves increased pressure on the brain in the first 48 hours after the stroke. These patients' chances of survival increase two-fold if they undergo surgery. However, patients who have been operated on often survive with severe disabilities, while patients who do not undergo the surgery generally die quickly. These findings were obtained in a study conducted by 13 German stroke centers led by Heidelberg University Hospital's Departments of Neurology and Neurosurgery and have been published in the current issue of the New England Journal of Medicine. "For the first time, it has now been proven that for a cohort of elderly patients too, hemicraniectomy can save lives," explained Professor Werner Hacke, Medical Director of Heidelberg University Hospital's Department of Neurology. A study published 5 years ago showed that in patients below the age of 60, the results of the procedure are more favorable (see Lancet Neurology, 2007 under Literature). "In younger patients, the surgery tripled the chances of survival. In … Continue reading

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New discoveries place lack of energy at the basis of Parkinson's disease

Posted: Published on March 21st, 2014

PUBLIC RELEASE DATE: 20-Mar-2014 Contact: Kris Van der Beken kris.vanderbeken@vib.be 32-924-46611 VIB (the Flanders Institute for Biotechnology) Neuroscientists Vanessa Moras and Bart De Strooper from VIB and KU Leuven have demonstrated how a defect in the gene Pink1 results in Parkinson's disease. By mapping this process at a molecular level, they have provided the ultimate proof that a deficient energy production process in cells can result in Parkinson's disease. These insights are so revolutionary that they have been published in the leading journal Science. Vanessa Moras (VIB/KU Leuven): "Having Parkinson's disease means that you can no longer tell your own body what to do. The hope of finding a solution to this has stimulated me for many years to unravel what goes wrong in the cells of Parkinson's patients. This research is an important step forwards." Bart De Strooper (VIB/KU Leuven): "Parkinson's disease is one of the research focuses in our department. It gives great satisfaction that we have unraveled a molecular process responsible for the faulty energy production process in cells of Parkinson's patients. This confirms our belief that repairing the energy production in cells is a possible therapeutic strategy." Faulty energy production forms the basis of Parkinson's disease. … Continue reading

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