Well Its another Labor day weekend

[SlickRick]

As you all know Labor day meens it's the end of another summer.

Part of Americana, like apple pie, baseball, and the weekend BBQ's. OF course I am talking about The Jerry Lewis Laborday telethon. How many more years do we have to watch this man cry and beg for money, saying help "Save my children".

Don't get me wrong it's a great org. For the 40 million people that get the help they need.

But as I may have said in the past I am one of the 40 million people that have have a from of Muscular Dystrophy. And I have seen more then my share of Drs over the past 17 years. And everyone of them has told me there wont be a cure in my life time.

MDA has been around since the 1950's, and has raised over 1-billion dollars. Now don't you honestly think there would be some sort of treatments if not cureable. Someone with HIV can get medications to knock that down. And that is still a new diseases concidering how long MDA has been around.

I'd rather have a from of cancer, at least I'd have a 50/50 chance with Chemo-Radiation Therapy

In my opinion they already have drugs to treat this but they are so costly the average joe like myself and the other 40 million people that have this diseases couldn't afford.


Honestly I don't want to offend anyone that lost a loved one that has/had cancer or HIV or whatever diseases.

I just go get goddamn frustrated this time of year listining to all the BS coming from the telethon.

I am going to hit the bottle again my drunk is wearing off.

[Extreme John]

Slick,

Another Labor Day weekend is right, and I have to tell you, I dont watch the JL Telethon, I use to when I was younger, but frankly got a little tired of it (plus times change).

In regards to you not wanting to piss anyone off (Cancer, Aids, etc.) I think it's safe to say we are all adults here, and everyone has some cause or belief or many that they support, I personally lost both of my parents to Cancer and my godfather whom I was very close to of Altzhiemers (not sure thats spelled right), those two diseases hit home base for me, so it's very easy for me to understand your frustration about MD, you have that right and I support you in that as well.

Stay busy, dont watch the Telethon and have a great safe LD weekend.

[Cleo]

Death, kills 100% of its victims. Stem cell research offers hope for everyone including sufferers of Muscular Dystrophy.

Personally I'm sick of hearing about how a group of cells smaller then a pimple is somehow protected life.

Bring on the research…

[SlickRick]

Extreme John,

sorry to hear about your parents.

I can relate with you as well.

My aunt Mary passed away from cancer. But her death was sudden within our family. She went into the hospital feeling really ill and passed 3 days later. (The plug was pulled) She didn't even know what hit her. Mary was only 43 year old.

My grandmother was stricken with Alzheimer's. Which was really hard to see personally. Because Mary was my grandmothers youngest daughter. I can't say I know for sure that my grandmother knew that her daughter had passed away. I saw first hand how bad my grandmother was at Marys funeral.
She (my grandmother) was introducing me around to others as her son, she thought I was my father.


Its hard not to watch though. Its like when your driving and theres an auto accident up ahead you have to take a look. As everyone else in front has done and just like everyone behind you will do.

[docholly]

Originally posted by Cleo
Death, kills 100% of its victims. Stem cell research offers hope for everyone including sufferers of Muscular Dystrophy.

Personally I'm sick of hearing about how a group of cells smaller then a pimple is somehow protected life.

Bring on the research?

AMEN to that!!! never understood the philosophy that one can be pro death penalty and anti choice.. sooo we can birth them...then let them "fry" later??? *please add this to my gripes my ass list*..

******************
in channel surfing last night, i stumbled on the JL Telethon. It was like watching a car wreck..i couldnt move my eyes from him and how there is ZERO resemblance to his former self. Nor could i tear my ears from Don Rickles because i was STUNNED to hear the words coming out of his mouth. All he was missing was the white robe with pointed hat.

Slick Rick: Rock on that you are able to articulate your frustrations! Some people fear voicing what they feel.

We are all born to die, it's how we live that is important.

[SlickRick]

Cleo,

I understand Death, kills 100% of its victims. And I fully aggree with you when you say "Bring on the research". Be it for my own selfish reasons. I am sick and tired of not being able to do the simple thigs like stepping up on a curb without having a kruch; for example: using my car to push my self up to higher ground.

But until the price goes down on this so called research, they the medical professionals within the MDA. I was watching and they said that $5,300 raised only pays for 100 minutes of research time. The cost must be lowered.

My opinion the only people benifiting from this is the medical professionals and their bank accounts.

As far as Stem cell research I honestly dont know much about it. But I would be first in line if they wanted to test it on people.

Its a bit dificult when they only proform about 3-4 test a year on people, and thats a blind placebo test so out of 4 gorups with 12 in each group thats only 48 people. Now with a blind placebo test only half of the 48 people get the actual drug the other 24 peeps get a friggen suger pill.



My last appt at MDA was about 4 years ago. I went in to have a DNA test to make sure I had what they told me I had orginally. From over the years of seeing Drs they told me that no one at my age (then) with the form (I wont say I suffer from, I have no pain what so ever.) of Muscular Dystrophy I have, is still able to walk.

My point behind this is the genetic counselor I saw told me flat out that there wont be a cure in my life time. I had to ask where the research money was going then. She told me in some medical gargon, which I didnt understand, and asked her to clarify that for me.

So in my words of how she told me how they will iradicate this.

If I was married and wanted children (The non-traditional way) they would take my semen and take the defective MD jene out and then inseminate the wife.

Again this is no cure for me or the 40 million others that have this diseases.

So where is the money really going?!!!
I have no fucking Idea...


I think I've babbled on long enough here, I am going to get back to work.

[docholly]

Not to be morose but here is an interesting website

Where does the Money go

and here is a quote from another one:

Everybody has given at least a few bucks to the Muscular Dystrophy Association, "Jerry's Kids." We followed the money. Turns out that only eight cents of a gift dollar actually gets to people with muscular dystrophy. And although Jerry himself often reminds telethon viewers that MDA does not pay him a penny for his charitable work, we learned that MDA does reimburse his travel expenses. On Jerry's annual travel budget, you could fly to the moon and back.

~Mouthmag.com

[Extreme John]

Ya know I read that quote for a moment, and i pissed me right the fuck off, 1st thing I was going to type was, "If thats true, Jerry can look at my Avatar" than I did something I rarely do before shooting my mouth off, I stopped to think... Ya know, Jerry honestly, owes MD, and the people with it, as well as the people without it and the people that donate not one damn thing, so if it pays for his travel to do something like the JL Telethon, than so be it, who the hell am I to bitch or pass judgment, he could have never started it, or had anything to do with it at all.

Just my nickle.

[docholly]

well the mag quote was really for this:

Turns out that only eight cents of a gift dollar actually gets to people with muscular dystrophy.

the part about Jerry is minor compared to that..

[SlickRick]

I wouldnt be likely to believe something posted on a web page like there was. Anyone could get the correct info for their own personal knowlage by contacting the MDA ORG that info is pretty much open to the public.

As far as 8 cents from each dollar is for people that have Muscular Dystrophy. I don't know. I have never asked MDA ORG for anything. But they did cover a few little out-paitent surgurys I had, and a several Dr/medical visits.

Its not like the 9-11 terrorism fund where people collect funds for the lose of a loved one.

And Mr Jerry Lewis's only involvement is giving his name to the MDA ORG. Other then that he is pretty uninvolved with where the money is to go and for what.