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Epilepsy Foundation of Massachusetts & Rhode Island
Recent Happenings:___5.16.08__________ |
| -Youth in Transition Programs |
First Annual Walk for Epilepsy - Maine
A new EFMRI tradition is set to begin May 18thin Saco, Maine. Young Elementary School will play host to the first Walk for Epilepsy in Maine. The EFMRI is in the initial phases of extending mission of Epilepsy Awareness to both Maine and New Hampshire. We welcome our Neighbors to the North with open arms and quick feet!Download the brochure here.
We Did It!
15th Annual Walk for Epilepsy
Not even rain could stop us! |
Check out all the pictures and stay close as we, relay stories and reveal the fundraising total!
Fundraising Total - Over $70,000
EFMRI wants to thank Karen Donahue for her inspiration, determination and sharing her story with us all. Karen single handedly raised over $2,000 by running the Boston Marathon this year. Thank you for all your continued support Karen.
Congratulations Karen all all who ran the Marathon.
Karen's Time: 3:31:01
Donations still being accepted on behalf of Karen. Click here to donate
New AED Medications Highlighted
Many newer anti-epilepsy drugs (AEDs) are now available and are usually better tolerated than the older, standard AEDs. They often cause less sedation and require less monitoring. Although they are generally approved for use as add-ons to standard drugs that fail to control seizures, many doctors are now prescribing them as single drugs. Specific choices usually depend on the individual's particular condition and the specific side effects of the AED. None has emerged as being superior to either standard or newer drugs. All appear to offer some benefits, but, as with standard antiseizure drugs, they also have troublesome side effects.
Read the rest of the article.
Read more HeathCare news relating to EFMRI.
Randomized Trial Confirms Efficacy of Ketogenic Diet
A randomized controlled trial has confirmed the efficacy of the ketogenic diet in helping control and prevent epileptic seizures in children with drug-resistant epilepsy. These are the conclusions of authors of an article published early online and in the June edition of The Lancet Neurology.The ketogenic diet has been used widely and successfully to treat children with drug-resistant epilepsy since the 1920s. It is a diet very high in fat, low in carbohydrate, and with controlled protein. Although the exact mechanism of action is still unclear, the high fat and restricted carbohydrate content of the diet is thought to mimic the biochemical response to starvation, when ketone bodies*, rather than sugars, become the main fuel for the brain’s energy demands. While there have been many observational studies of this diet, Professor J. Helen Cross of the Institute of Child Health and Great Ormond Street Hospital for Children NHS Trust at the University College in London and colleagues have done the first randomized controlled trial to test its efficacy.
The trial assessed 145 children aged between 2 and 16 years who had at least daily seizures (or more than seven seizures per week), had failed to respond to at least to antiepileptic drugs, and had not been treated previously with the ketogenic diet. Seventy three children were put on the diet immediately while 72 were assigned to the diet after a delay of three months. The delay group acted as the control group during the three-month delay. Using the baseline figures as 100 percent, they found that the number of seizures in the diet group dropped by more than a third (62 percent of seizures recorded compared with baseline), while the control group saw their seizures rise by more than a third. Twenty-eight of the 54 children who completed the three months in the diet group had greater than 50 percent seizure reduction compared with just four of 49 children in the control group. Five children in the diet group saw a seizure reduction of above 90 percent, compared to none in the control group. The most frequent side-effects reported at three months were constipation, vomiting, lack of energy and hunger.
Read more.
Senate Bill 1296
- An Act to Protect Epilepsy Patients
"A pharmacist may not interchange an anti-epileptic drug or formulation of an anti-epileptic drug, brand or generic, for the treatment of seizures (epilepsy) without prior notification of and the signed informed consent of such interchange from the prescribing physician and patient, or patient's parent, legal guardian or spouse of such person."
The American Academy of Neurology states: "Massachusetts Senate Bill 1296 would prevent pharmacists from substituting one AED for another without the informed consent of the prescribing doctor and patient. Substitution of AEDs can have devastating consequences. This bill would protect Massachusetts physicians’ autonomy to make treatment decisicions for their patients with a seizure disorder."
Senator Moore sponsored the bill in the summer of 2007. The bill needs our help and support to pass. Pleaselet your member of Congress know that you support full patient, doctorandpharmacuticaldisclosure. Seizures disorders are inherently unpredictable and their impetus enigmatic. Thoseliving with epilepsy live in a constant state of unpredictability. The only thing they can rely on is the trust they have in their physicians and in their prescription medications. Athird party cannot be allowed to enter into this delicate balance dealing with such a sensitive condition.
For more information, please contact us at 617-506-6041 or by email.
We Take Cars Too!
Are you thinking of selling or trading in that car, boat or RV? Why not donate it instead? Bydonating your car you could earn a charitable income tax deduction and help make a difference in the lives of people with epilepsy.We will make all ofthe arrangement to pick up the vehicle at no cost to you. We can arrange to pick up most vehicles anywhere in the continental United States and Hawaii. We will also provide you with the necessary paperwork so you can claim a charitable income tax deduction.
For more information please call 877-EF-Cars-7 or 877-322-2777.
Penny Pirate Program Sets Sail.....
Want to be a Penny Pirate? Click here for more information!