Max McGhie, 13, from Scotland, has Lennox-Gastaut Syndrome The rare epilepsy sends him into seizures more than 110 times a day His family are now trying to raise 65,000 for treatment in Miami, Florida By Sara Malm Published: 11:34 EST, 25 April 2014 | Updated: 11:34 EST, 25 April 2014 A boy suffering from more than 110 seizures a day is trying raise 65,000 to fund treatment that could eliminate his convulsions for good. Max McGhie, 13, from East Kilbride, Scotland, has a rare form of drug-resistant epilepsy which is so severe he has almost lost the ability to speak. Max and his family now hope that treatment in the U.S. could offer a way out, and perhaps eliminate his seizures for good. Hoping for help: Max McGhie, pictured with his mother Seonaid, has Lennox-Gastaut Syndrome, a rare form of epilepsy which sees him suffer over 110 seizures a day Max has Lennox-Gastaut Syndrome, an uncommon strain of the condition leaving him in such severe convulsions medication does not help. As a result of the severity of his spasms and the cocktail of drugs he has to take, Max's speech has almost disappeared. Max and his family, mother Seonaid, father … Continue reading →

By Rod Boshart, Gazette Des Moines Bureau DES MOINES The Iowa Senate on Thursday approved a narrow opening for Iowa parents whose children suffer from severe epilepsy to be able to access cannabis oil as a treatment option. After a debate charged with emotion, senators voted 36-12 to pass a bill that legalizes the possession and medical use under certain conditions of cannabidiol, a non-psychoactive component of marijuana that backers say possesses a wide range of therapeutic benefits. Ten Republicans joined 26 Democrats in passing the bill. The oil that we are talking about does not produce a high, said Sen. Charles Schneider, R-West Des Moines. The bill we put together will not open the door for recreational use. The measure, which now goes to the Iowa House for consideration, would give prosecutorial immunity to people who possess cannabidiol, a non-smokable oil extract of marijuana with a low THC level to treat seizures. It would require patients or their caregivers to obtain a state-issued registration card to possess the drug and to have a neurologists recommendation to obtain the license. The act will sunset July 1, 2017. Sen. Nancy Boettger, R-Harlan, said she was concerned that young people who read … Continue reading →

UCB ( UCBJF ) reported sales results for the first quarter of 2014. Revenues rose 9.1% year over year to approximately $1.2 billion due to strong sales of Cimzia, Vimpat and Neupro. All growth rates mentioned below are on a year-on-year basis and at CER. Cimzia (Crohn's disease and rheumatoid arthritis, psoriatic arthritis, and ankylosing spondylitis) sales increased 36% in the reported quarter due to approval of additional indications which broadened the patient access. Vimpat (epilepsy) sales increased 23% due to strong sales in the U.S. Neupro, which is marketed as a treatment for Parkinson's disease and restless legs syndrome, delivered sales growth of 45%. Neupro sales were driven by strong performance in the U.S. and Japan. Sales of Keppra, another epilepsy treatment, increased 2% due to good performance in Japan. Pipeline Update Vimpat as monotherapy treatment in epilepsy patients with partial-onset seizure is currently under review in the U.S. This supplemental new drug application (sNDA) was accepted in early Oct 2013. The European Commission granted amended marketing authorization for Cimzia for active axial spondyloarthritis (axSpA) in Oct 2013. The FDA approved Cimzia for the treatment of active psoriatic arthritis and active ankylosing spondylitis in Sep 2013 and Oct 2013, … Continue reading →

PUBLIC RELEASE DATE: 24-Apr-2014 Contact: Steffanie Marchese steffanie.marchese@autismspeaks.org 646-345-8537 Autism Speaks NEW YORK, N.Y. (April 24, 2014) A new study from investigators with the Autism Genome Project, the world's largest research project on identifying genes associated with risk for autism, has found that the comprehensive use of copy number variant (CNV) genetic testing offers an important tool in individualized diagnosis and treatment of autism. Funded primarily by Autism Speaks, the world's leading autism science and advocacy organization, the Autism Genome Project involved more than 50 research centers in 11 countries. The report, published today in the American Journal of Human Genetics, delivers on the 10-year project's objective to provide practical methods for earlier diagnosis and personalized treatment of autism. "With the publication of this study, we should step back to recognize and celebrate the pioneering achievements of the AGP and what they have accomplished in helping to launch the field of genomic risk discovery in autism," says Autism Speaks Chief Science Officer Rob Ring. "The AGP has generated information that holds the potential to guide medical care for certain individuals with autism today. They have demonstrated that science can work for families, and Autism Speaks is proud to have been … Continue reading →

An Oregon State University researcher has found a relationship between motor skill deficiencies and the severity of the symptoms of autism spectrum disorder in very young children. The findings, believed to the be the first to show a direct relationship between motor skills and autism severity, indicate that development of fine and gross motor skills should be included in treatment plans for young children with autism, said Megan MacDonald, an assistant professor in OSU's College of Public Health and Human Sciences. "Recognizing those deficits really early gives us more time to help children catch up to their peers in regards to motor skill," said MacDonald, who is an expert on the movement skills of children with autism. The research was based on a study of the development and motor skills of 159 children ages 12 months to 33 months old, including 110 children with an autism diagnosis. Results were published this week in Adapted Physical Activity Quarterly. The motor skill deficiencies among the children with autism were not related to intellectual ability, MacDonald said. She found that the children with autism were nearly a year behind their typical peers in fine motor skills, such as holding a spoon or grasping … Continue reading →

PUBLIC RELEASE DATE: 24-Apr-2014 Contact: Megan MacDonald Megan.MacDonald@oregonstate.edu 541-737-3273 Oregon State University CORVALLIS, Ore. An Oregon State University researcher has found a relationship between motor skill deficiencies and the severity of the symptoms of autism spectrum disorder in very young children. The findings, believed to the be the first to show a direct relationship between motor skills and autism severity, indicate that development of fine and gross motor skills should be included in treatment plans for young children with autism, said Megan MacDonald, an assistant professor in OSU's College of Public Health and Human Sciences. "Recognizing those deficits really early gives us more time to help children catch up to their peers in regards to motor skill," said MacDonald, who is an expert on the movement skills of children with autism. The research was based on a study of the development and motor skills of 159 children ages 12 months to 33 months old, including 110 children with an autism diagnosis. Results were published this week in "Adapted Physical Activity Quarterly." The motor skill deficiencies among the children with autism were not related to intellectual ability, MacDonald said. She found that the children with autism were nearly a year behind … Continue reading →

By Dennis Thompson HealthDay Reporter WEDNESDAY, April 23, 2014 (HealthDay News) -- Every minute counts for stroke victims who need clot-busting medications quickly to restore blood flow to their brain and prevent further damage. Now, new efforts to hasten treatment in both ambulances and emergency rooms appear to have significantly improved patients' chances of survival and limited their long-term disability, according to a pair of studies in the April 23/30 issue of the Journal of the American Medical Association. A quality improvement initiative in hospital emergency departments significantly reduced the time it took for doctors to begin treatment of stroke patients with a clot-busting medication called tissue plasminogen activator (tPA), the first study found. But a specialized ambulance equipped to start stroke treatment on the way to the hospital cut that time even more, according to another study in the same issue of the journal. One expert, who wrote an editorial accompanying the findings, said the results were impressive. "These are completely complementary strategies, and both of them should be implemented," said Dr. James Grotta, director of Stroke Research, Clinical Innovation & Research Institute at Memorial Hermann-Texas Medical Center in Houston. "We should be able with both to increase the … Continue reading →