October 24, 2011

ALS= Lou Gerrig's Disease






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.

5 comments:

  1. One of our friends died from ALS years ago just at retirement age and it was so sad and devasting, but he didn't live as long as Pam, there is hope. I remember when you first posted about Pam, my heart goes out to her and her family and you, it's devasting all around.

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  2. H there. I don't know if you remember, but my husband did a story on a young girl here in NC that had ALS, she passed away shortly after he did the story. She really touched his heart and his package was considered for entry into the Pulitzer contest. It's a sad and horrible disease. Here is the story if you are interested
    http://www.dailyadvance.com/ap/statea/love-teens-face-deadly-diagnosis-217997
    all the best to your friend!

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  3. Horrible linda- thanks.
    Tracy , I totally read it when you told us about it... Posted it to facebook too.(your favorite)

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  4. Happy Birthday to Pam. May God bless you and bring you the peace that passes all understanding.

    My mom contracted ALS and lived with (thru God) for 8 years. What a beautiful woman she was and I still miss her terribly. She will continue to be an inspiration to me.

    My heart goes out to all (and the families) that endure this disease.

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  5. Anonymous1:06 AM

    Just reading some of the als stories. My friend Billy is 51 yrs old and played college football. He was also diagnosed with Als in 2008. By the grace of God he is still here. You are all so right, this is a very devastating ordeal to go thru, especially with someone you love. God bless all of you and I pray that he sees you through.

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