The Charlie Foundation
From L to R: Val Aldridge, Beth Zupec-Kania, Emma Williams, Jim Abrahams, Julie Edwards
SIDE BY SIDE - A Message From Emma
I am absolutely thrilled and very proud that Matthews Friends and The Charlie Foundation are working together. Jim Abrahams is a legend in the Ketogenic world and it is thanks to him, Nancy and of course their son Charlie that the resurgence of interest in the diet began again – so we all have a lot to thank them for.
Jim was a huge inspiration to me in setting up Matthews Friends as I felt that we needed something like The Charlie Foundation in the UK. His film ‘First Do No Harm’ has touched every single one of us who has seen it (if you haven’t seen it then MF obviously carries copies of this DVD in our library so you can borrow it)
“One of the most incredible films you will ever watch”
Beth Zupec-Kania is the Consultant Dietitian to The Charlie Foundation; she is a lovely lady who is very dedicated to her work. With over 14 years experience of using the Ketogenic diet, she certainly knows her stuff. Beth came over and presented with some of her other American colleagues at the first Matthew's Friends European Training Meeting for Dietitians and Nurses in 2009.
SIDE BY SIDE - A Message From Jim (written in 2006)
Statistically, after the failure of one anti-epileptic drug, if a child is not a good surgical candidate, the ketogenic diet is the safest, most effective treatment for children with epilepsy. It’s that simple.
Yet, every year, tens of thousands of children’s brains around the world are forever damaged because their families never learn of the diet. If you go back to the early 1920’s, when the diet was formally invented at the Mayo Clinic, and calculate the number of lives damaged or lost because they never found this information, it is a human tragedy of incalculable proportion.
Sometimes, the battle to elevate the ketogenic diet to it’s rightful priority in the struggle against childhood epilepsy can feel almost as frustrating as finding the diet in the first place. Medical intransigence, drug companies’ profits, governmental indifference, and insurance company’s reluctance to recognize their savings for every kid who has success with the diet, provide formidable opposition. Sometimes it’s like trying to stop an avalanche with a bee bee gun.
In 1995 I asked Dr. John Freeman at Johns Hopkins, who had put Charlie on the diet, why none of the pediatric neurologists in whose arms Charlie had had seizures told us about the diet. He told me the diet would never become accepted through traditional avenues of Western medicine (neurology publications, studies, meetings, etc.). So I set about trying to invent some ways to circumvent the medical community and go straight to the families that thirsted for this information.
Today, it is not at all uncommon to hear the same reaction that we had fourteen years ago with Charlie from other families who see the miraculous effect of the diet. (Charlie has been seizure, drug, and diet free for over nine years). First, an overwhelming but tenuous (is this really happening?) gratitude; followed by a kind of mixture of outrage for not being told, guilt for not finding it earlier ourselves (or worse, buying into the medical bias); and finally a passion to put a silver lining on this devastating experience by helping others avoid the same toxic trap.
Many families who see success with the diet have done the same--going to their local media to help spread the word, helping establish keto departments at hospitals, forming support groups among keto families, publishing keto newsletters.
Then, recently, from across the Atlantic, we heard about (or more accurately felt the sonic boom from) Emma Williams and Matthews’ Friends, a dynamic new force in the U.K. on the same mission--and with equal fervor. We had a chance to meet at two keto seminars in the past several months. Emma suggested we work side by side. I thought it was a great idea. (Besides, I defy anyone to say “no” to Emma Williams).
The Charlie Foundation and Matthews’ Friends have been ignited and united by the identical fuel. We simply cannot and will not rest until we’ve done all we can to right this terrible wrong--and better health is made available to all those children, and others, with difficult to control seizures.
The Charlie Foundation To Help Cure Pediatric Epilepsy
Update - February 2010 (by Emma)
The work carries on!
Jim and I an Arizona - 2008
Jim and I have been talking together (and firing one another up even more - if that is at all possible!) for the past few years and getting to know the family has been a true honour. I got some time with Nancy back in November when we went out to America for the US Dietitian and nurse forum meeting and we are planning to get together during the summer this year as well. By the time we have finished, goodness only knows what projects will be planned. It is a very good job that Jim has Beth and I have Julie to calm us both down!
Sadly the DVD we had planned on doing and was indeed filmed at the 2008 global symposium was not able to be done because the company that Jim had employed to do it made a complete mess of it - as you can imagine he was not happy! However some of the interviews that were carried out he was able to put on youtube and the CF website - so you can watch them through the links. They are also available on the video section of this site.
Beth, Jim and I in serious discussions with Jong Rho!
This year we hold the first Matthew's Friends/Charlie Foundation joint International Family Conference in Edinburgh which is being attached to the scientific symposium. It would be lovely to meet as many of you as possible so we look forward to seeing you there. Details are again available on this site (go to global symposium section) and through the Charlie Foundation website.
From both Jim and I - we look forward to seeing you in October and if we can help in any way then please don't hesitate to contact us.
VISIT THEIR WEBSITE HERE