Some of the earliest research on MECP2 gene and protein focused on its role in the circadian cycle that regulates sleep and wakefulness . Now, researchers from Barcelona have taken that research a step further. They showed that the highest levels of MeCP2 protein occurred during the sleep phase and lowest during the awake phase. Continue reading
Some very encouraging news. Researchers at at New York University’s Langone Medical Center have reported results from clinical trials of Epidiolex, a pharmaceutical preparartion of CBD Cannabidiol. The study was structured to determine if the medication was safe, not to measure effectiveness as a an anticonvulsant. Nevertheless, 80% of the participants in the study decreases in seizure activity and on average. The average result for participants was a 54% reduction in seizures after 12 weeks of treatment. Additional clinical trials are still in progress. Continue reading
April 2015 One way that affected children and adults and their families can help research is by participating in studies. … And Nashville is a great city to visit.Dr. Sarika Peters at Vanderbilt University seeks enrollment for language/auditory , MECP2 Duplication Syndrome, Rett Syndrome and MECP2-related disorders research project, funded by a Rettsyndrome.org HeART grant. Only one visit, approximately two hours in length, is required at Vanderbilt in Nashville. A $50 gift card will be offered to each participating family, reduced hotel rates can be arranged as necessary, and free on-campus parking will be extended. Download flier for enrollment details.