My friend Pam, who has ALS(Lou Gerrig's Disease),was diagnosed about 5 years ago and has really hung on(her diagnosis at onset was 1-2 years at best.
****I was going to post a much more recent photo but it's pretty devastating.****
Some people(Steven Hawking) have a much slower progression.
Here is my blog post about her May 3, 2009:
(the photos appear to not work...)
Jane Fonda met her and wrote about her on her BLOG.
Today Pam is completely immobile, breathes with a trache and vent, feeding tube, everything.
She can move her left eye to the right only.
She can feel everything.
She is completely aware.
Her brain is not effected.
It is terrible.
TODAY is her BIRTHDAY.
I know there is nothing she would want more than to know that no one has forgotten how important this is to her.
We hope to see forward movement in the research to end or at least stall this disease .
(which in 10% OF THE CASES IS GENETIC and in OTHER CASES SHOW IT COULD POSSIBLY STRIKE ANYONE)
The Copper Canyon Restaurant is donating a portion of all proceeds from dining at the restaurant this week as well as cards to purchase at the bar, which will be given to her after the event.
I happen to know that ALS TDI is doing some very important work that I believe will be announced at a conference they are having in early November in Boston.
This is very exciting.
TDI is closer than ever to therapies and can only work as fast as the money comes in....
I really hope you can put this on your list of causes to contribute to.
***To give you a little perspective, years ago, people didn't even mention "cancer" as it was considered a death sentence.
It was not until ATTENTION and MONEY went to various cancer researches(breast- for example) that people became educated and contributed and more and more therapies were able to be developed. Today, not only can people talk about the disease openly and honestly ,but, REAL STRIDES have been made to halt and end death from horrible cancer illnesses.***
This is a real possibility for the future of people diagnosed with ALS.
Especially those NOT YET DIAGNOSED.
Please think about it and do what you can to bring awareness to this illness and possible future therapies.
NONE of us would want to see ANYONE go through what we have seen Pam and her family go through these past several years and this is a real shot at keeping that from happening.
Pam's dad died from this illness. She has 4 boys.
Sorry for my soap box.
You just never know unless you try.
I just feel that, if nothing else, we can continue to try and help work toward a progressive end ,or at least a HALT, to ALS and all that it means.
If you can, please donate HERE:
Any amount is appreciated.
And most importantly, realize that this is a cause that needs ATTENTION.
With so many people with illness dying before anyone knows what it is or how they can help, they really struggle to get noticed.
Tell people about it.
Let them know what it is.
EDUCATE THEM.
