JOIN THE FIGHT

We would like to thank all those who participated in the first MOBE motion pilot study in conjunction with the Epilepsy Foundation. The information collected to date has been extremely important for moving to the next step. Based on this data, a decision has been made to close the first pilot study and prepare for starting the next phase of the program with an enhanced motion monitor that will include additional functionality. The actual start date of the next pilot is not yet finalized, but you will be receiving a communication in the coming weeks with more detail.

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 Story Days: Charles (Epilepsy Awareness Month) 

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LATEST EFGC NEWS

The Honorable Tammy Duckworth, US Congresswoman, to be honored at annual Heroes Night Gala

The Honorable Tammy Duckworth, United States Congresswoman, will be honored as the recipient of the Richard N. Rovner Hero Award for her outstanding commitment to people living with disabilities at the Epilepsy Foundation of Greater Chicago’s annual Heroes Night Gala on February 20, 2015. In 2004, Duckworth was deployed to Iraq as a Blackhawk helicopter pilot for the Illinois Army National Guard. She was one of the first Army women to fly combat missions during Operation Iraqi Freedom until her helicopter was hit by an RPG on November 12, 2004. Duckworth lost her legs and partial use of her right arm in the explosion and was awarded a Purple Heart for her combat injuries. In 2006 she became Director of the Illinois Department of Veterans Affairs, during this time she became very active in seeking treatment and funding for traumatic brain injuries to veterans. In 2009, President Obama appointed Duckworth to be Assistant Secretary of Veterans Affairs. Duckworth ran for Congress in 2012 to advocate for the practical solutions and cooperation needed to rebuild our economy and ensure that every American has a chance to achieve the American Dream.

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Governor Rauner Needs to Know the Importance of Medical Marijuana

Former governor Pat Quinn left office on January 12th, 2015 without distributing the licenses needed to grow and distribute medical marijuana, leaving that responsibility to his successor, Gov. Bruce Rauner. This is a serious setback for those in need of cannabidiol to help control seizures. Gov. Rauner has expressed his concerns over the use of medical marijuana and stated that he needs to assess Illinois’ medical marijuana program, which can only lead to further delays in its implementation. We need the Governor to know how important access to this treatment is to so many people including families, individuals, and children. Please reach out to Gov. Rauner and share your story. Let him know how this time sensitive matter can impact your life and how much it means to you. This may be a setback now, but if we work together and get our voices heard, we can make a difference. You can also reach out to Illinois Senate President John Cullerton and let him know how important it is that action be taken to resolve this matter.

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Families with sick kids worry about delay in medical pot licenses

Carolyn and Mike Burkhead of downstate Maryville do not know what they are going to do. Their 3-year-old daughter Mira has a form of epilepsy that subjects her to severe, debilitating seizures. Her parents have tried nine different medications to treat Mira’s illness, but so far none have worked. The Burkheads’ last hope is cannabidiol, or CBD, a key ingredient in cannabis plants that does not have psycho-active properties, but has shown promise in the treatment of epilepsy. They had hoped that legal CBD, under the pilot medical marijuana program that began Jan. 1, would by available by now. So far it isn’t.

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‘Microlesions’ in epilepsy discovered by novel technique in a study conducted by newly elected EFGC Board Member, Jeffery Loeb, MD

Using an innovative technique combining genetic analysis and mathematical modeling with some basic sleuthing, researchers have identified previously undescribed microlesions in brain tissue from epileptic patients. The millimeter-sized abnormalities may explain why areas of the brain that appear normal can produce severe seizures in many children and adults with epilepsy. 

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Crystal Lake resident hopes to ‘cap the copay’ on high-price specialty drugs

Lisa Thomas is hoping there is a cure for the cost to cure. Thomas, whose 16-year-old son Ryan has epilepsy that causes seizures, takes less than two months to blow past the family’s annual $3,000 deductible because of the high copay costs for her son’s medication. She said it’s not unusual to hit the $10,000 out-of-pocket maximum in copay expenses in six months.

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Three Studies Shed New Light on the Effectiveness of Cannabis in Epilepsy

In advance of the American Epilepsy Society’s (AES) Annual Meeting in December, the organization has offered highlights of groundbreaking research being studied at a number of institutions regarding the effectiveness of cannibidiol (CBD) and its derivatives as a viable treatment for people with epilepsy.

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333 Patient Groups Join Together to Ask HHS Secretary Burwell to Reduce Barriers to Care in Qualified Health Plans

Three-hundred-and-thirty-three patient groups from around the country have signed onto a letter to Secretary of Health and Human Services (HHS) Sylvia Mathews Burwell calling for immediate measures to reduce barriers to care for patients who have purchased policies through the Health Insurance Marketplace (the “exchanges”). The letter comes as some patients with chronic conditions have faced difficulty accessing crucial medications and other health services they need in some Qualified Health Plans, and as HHS is reviewing plans for 2015.

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