The US Food and Drug Administration approved a cannabis-based drug for the first time, the agency said Monday. 07/03/2018
Epidiolex was recommended for approval by an advisory committee in April, and the agency had until this week to make a decision.
The twice-daily oral solution is approved for use in patients 2 and older to treat two types of epileptic syndromes: Dravet syndrome, a rare genetic dysfunction of the brain that begins in the first year of life, and Lennox-Gastaut syndrome, a form of epilepsy with multiple types of seizures that begin in early childhood, usually between 3 and 5. Read More
SENATE PASSES H.B. 5384, 05/09/2018
Yesterday, May 8, the Senate passed H.B. 5385 in concurrence with the House of Representatives. This bill establishes new transparency requirements for state agencies and various entities that impact the prices of prescription medication.
The bill now goes to Governor Malloy's desk to be signed. This is a great legislative victory for the Epilepsy community throughout Connecticut! Read More
CT House of Representatives passes House Bill 5384 to the Senate 05/08/2018
The Connecticut House of Representatives passed H.B. 5384, "AN ACT CONCERNING PRESCRIPTION DRUG COSTS", on Friday, May 4 with a vote tally of 149 YEA, 0 NAY, and 1 ABSENT/NOT VOTING.
The Epilepsy Foundation of Connecticut strongly supports this legislation as it would establish new transparency requirements for state agencies and various entities that impact the prices of prescription medication.
Like many of our partners in the patient advocacy community, we are concerned about high cost-sharing that makes it hard for people living with epilepsy and other chronic conditions to access the medications and services they need. We support policies that create greater transparency in the health care system and that reduce or limit cost-sharing for the medications and services that our community relies on to maintain their quality of life.
The bill now heads to the Senate awaiting action. URGE YOUR STATE SENATOR TO SUPPORT THE PASSAGE OF H.B. 5384!
PICNIC UPDATE... 09/30/2016
Due to the poor weather forecast for tomorrow, we will be postponing the picnic for next Saturday October 8th. It will be at the same time 11-1PM. Sorry for the change. Please let us know if you are unable to make it! Read More
Urge Congress to Oppose Attempts to Erode Disability Rights Guaranteed by the ADA 09/16/2016
The House Judiciary Committee recently passed legislation, the ADA Education and Reform Act of 2015 (H.R. 3765), which would weaken protections for individuals living with a disability by making it easier for businesses to avoid complying with accessibility requirements under the Americans with Disabilities Act (ADA). The changes proposed in H.R. 3765 undermine the promise of the ADA by shifting the burden for ADA compliance from business owners to people living with disabilities. The bill would require a person living with a disability to provide written notice to a business that has not complied with ADA, kicking off a long timeline for compliance, despite the ADA being the law of the land for Read More
Mark Twain & Epilepsy 09/15/2016
The Trouble Begins at 5:30: Karen Lystra on "Facing Epilepsy: Mark Twain, Jean Clemens, and a Family Reclaimed"
Thursday, September 15, 5:00 Reception - 5:30 Lecture
Location: Mark Twain House 351 Farmington Ave, Hartford, CT 06105
Noted Twain Scholar Karen Lystra, formerly Professor of American Studies at California State University, Fullerton, will speak about Mark Twain’s youngest daughter, Jean Clemens, in this season’s inaugural edition of our popular lecture series The Trouble Begins at 5:30. In conjunction with our current exhibit In Their Father’s Image: Susy, Clara, and Jean Clemens, Dr. Lystra will explore how Jean's epilepsy affected Twain and his family. Jean played a pivotal role in Twain's late years. His last major autobiographical writing involved his realization of how much he had misunderstood and neglected her. The virulent prejudice against people with epilepsy in this era will also be examined. Read More
Medical homes model spreading slowly 11/19/2010
O'Callahan's practice is a medical home, a model for coordinating patient care that has been gaining attention nationally but is still in its infancy in Connecticut, according to a report by the Connecticut State Medical Society. Read More