Monday, September 28, 2009
Friend with ALS seeking drug in Italy.
So, my very, very, very close friend since I was 3 years old, Jeff Berebitsky got married a few years ago. He is the friend I would go to every dance with in high school because I was too awkward to actually date someone. His was the first phone number I memorized. We pranked called each other. When three way calling was invented we prank called everyone. Jeff and I share many things including being tortured by our older brothers, being small, wearing glasses from the age of 6, teaching the other kids in elementary school about sex and curse words. During that time there has been a lot of loss as well but also a lot of fun.
I met Jeff's wife for the first time the weekend of their wedding and I had to really hold it together. It's not often that you really see your friend meet the one, and Jeff had clearly met his one. The wedding was beautiful with a touch of granola.
So last April when I found out Jeff's wife had ALS I couldn't believe it. I thought my friend was lying to me. ALS is the same disease that become famous by Lou Gherig as well as the book Tuesdays With Morrie. It is the same disease Stephen Hawking has.
Jenni's prognosis is 2-6 years. She is a little younger than I am. They have a toddler Philip David.
Full email from Jeff:
As many of you know, my wife was diagnosed with ALS. And though right now she is healthy and vital, the disease does appear to be progressing at a pace we are unable to gage. With so few stricken with this disease there are not many resources dedicated to research and development. Right now there appears to be a single drug on the market that carriers legitimate hope of slowing and possibly reversing the affects. Unfortunately there is only one country, Italy, that has access. Due to patent infringement the drug, Iplex, is not allowed to be sold anywhere in the world except Italy. Please see this the following link on the background of this drug:
My interest in contacting you is not to change the law in this country, though it would be greatly appreciated:), but to find out if you know people/doctors in Italy or the US that might be able to help. We are interested in accessing the drug, if nothing else to slow the disease.
Please forward this request on to anyone that may be able to help along with any of your own thoughts.