Author Archives: publisher

After a family learns and then accepts that the hemipsherectomy surgery is the only treatment to stop the intractable seizures plaguing their child, their focus is then shifted to what happens after the surgery.  Following surgery, a hemi must relearn … Continue reading

Share
Posted in General Information | Comments Off

There has been a growing interest in genetics as the key to unlocking the mysteries of the epilepsies.  As a result of our RE tissue collection efforts there is interest in sequencing the DNA of individuals impacted by RE.  We … Continue reading

Posted in General Information | Comments Off

I heard from one of my research friends that there is promising news coming out of France about TNA alpha inhibitors and their success in stopping RE.  TNA alpha inhibitors are a class of drugs that are currently used to treat … Continue reading

Posted in General Information | Tagged , , , , , | Comments Off

It is with deep sadness that we note the passing of a good friend, Dr. Carol Kruse.  Carol was a leader in researching the underlying mechanisms of RE and one of my scientific mentors who encouraged me on my quest … Continue reading

Posted in General Information | Tagged , , , | Comments Off

A year ago a terrible tragedy happened to a very special person, Pouneh Bahri.  After enduring the hardship and tragedy of Rasmussen’s encephalitis, and then striving to find her own way in life, she was accidentally killed in a bus accident. … Continue reading

Posted in General Information | Tagged , , , , , | Comments Off

  On March 13th, the annual Lifting For Grace fundraising event will take place in our home town at Darien High School.  The event is focused on raising awareness for Rasmussen’s encephalitis as well as funds for our research programs … Continue reading

Posted in General Information | Tagged , , , | Comments Off

I continue to be contacted by parents from every corner of the world desperately seeking help for their children.  Most recently the e-mails have come from Israel, Rumania, and in the States from California.  Many of the e-mails ask if there … Continue reading

Posted in General Information | Tagged , , , , | Comments Off

We are in the early stages of looking at post high school alternatives and it is a real challenge to navigate the labyrinth of schools available to young adults with learning and physical disabilities.  Many schools offer programs that assist individuals … Continue reading

Posted in General Information | Tagged , , , , | Comments Off

I have been reading about Dr. Max Gerson, a remarkable doctor who devoted his life to refining a diet therapy which focused on healing the entire body rather than specific conditions.  Gerson lived during the mid 1900s and fled Nazi Germany … Continue reading

Posted in General Information | Comments Off

I hope you are doing well.  I wanted to follow-up on a letter I sent you to let you know about some of the progress we are making with the RE Children’s Project (www.rechildrens.org) in the ongoing effort to find … Continue reading

Posted in General Information | Tagged , , , , , | Comments Off