THE MISSION of the Dr. Alfonsina Q. Davies Epilepsy Foundation is to improve the lives of those afflicted through increased research efforts, a better treatment modality and the elimination of the stigma and prejudice that surrounds this disease in all facets of public life.
One result of research in epilepsy treatment…
“The Dr. Alfonsina Q. Davies Academic Chair for Research in Epilepsy” will have a world renowned scientist assigned to it by July 1st of this year. Some of you opened your hearts this past holiday and sent donations and for that we are very grateful. We appeal once again to your generosity. Even a 20 dollar bill multiplied many times can make a big difference. Research is basic so we can find a cure or a way to control all the neurological disorders that afflict the human race and most especially those who suffer uncontrolled seizures.
Research does not always produce an immediate answer, most often it is painstakingly slow. However the results can be amazing, as you will see. We are showcasing a treatment for epilepsy called a “hemispherectomy” which was not available when our Nina was a child. This method is primarily used when a child has intractable epilepsy and has multiple seizures a day. It has also been successfully used to treat a limited number of adults with intractable epilepsy.
In short, the neurosurgeon removes one hemisphere of the brain, or separates the two hemispheres to isolate the one that has the focus of the seizure. Many people, now in their teens or older are leading successful lives because of this breakthrough procedure. In our next newsletter,coming out Febbruary 19, we will feature a video with the touching story of Nikki, a small boy whose life was saved by having the treatment described above. 25-30% of those individuals with epilepsy are not controlled. More research is needed to help them have a normal life.
A seizure can happen to anyone at any age. PLEASE DONATE
In our Book, “Nina’s Courage in Epilepsy, we graphically presented the government’s funding of diseases such as Alzheimer’s, Parkinson’s, Autism, Breast Cancer and Epilepsy. Epilepsy came in last. Here is another example of the government’s neglect of this devastating neurological disorder.
Of the list of diseases, four are related to life style choices. Epilepsy, cancer and heart attacks are not personal life style related. To show the disparity: 1.1 million people have HIV and 15,500 die annually.
Epilepsy afflicts over 3,000,000 Americans and there are 50,000 epilepsy related deaths each year.
NIH – National Institutes of Health
Moments in Nina’s difficult life
It was three in the morning and a sweet face woke us up. Mami, I fell down the stairs, I woke up down in the living room. The fear hurt and surprise reflected in her beautiful face. She had a seizure similar to somnambulism, yet another type, another worry, more uncertainty. The next morning every muscle in her body ached and it was a miracle she did not kill herself.
We are now on Twitter! Please join us. Become a follower so you will get all of the updates as they come out. Send us your Twitter information at firstname.lastname@example.org and we will start to follow you. The name is “EpilepsyNinasCourage” Twitter address: @ninascourage.
Look for a Special Edition of the Newsletter February 19, 2014
Give a Gift of Life and Health. PLEASE Donate and remember all those who are suffering from a seizure disorder. Thank you.