Mark Smiths Blog

[Timm]

Someone sent this to me and I read it....I know some of you love Mark and we are good friends but this really hit a nerve more to come....

I guess what bothers me is sure MDA has its issue but the funding they give for powerchairs $2000 ever 5 years and $500 each year for repairs..

It all helps!


http://www.newmobility.com/browsePosts.cfm?blogID=4

Thoughts?

[rob]

Being an MDA patient too, i appreciate every dime they appropriate for us.

[FROG]

I find some irony in the fact that Mark chose "Timmy" as this year's poster child. :dft005:

[amyk]

i dont know anything about the mda or how it works, and i dont know what telethons are. but i think mark was highlighting a basic difference in the ways people think. the idea that disabled people are pathetic and need to be pitied is no good for a lot of disabled people, and its easy to see how that type of portrayl, particularily by the media, causes a lot of harm. i can also agree that the best way to raise money for anything disability-related is to make it seem as though the money is going to the most pitiful place - pathos is what loosens people's pursestrings... i know for myself, for the past year ive been trying to raise money for my paralympic campaign, and i know that if i can just bite the bullet and write about how 'poor pathetic amy needs money to go sailing, and she tries to lead a normal life, which is so hard for her, and you wont have to feel guilty anymore if you just give me some money so ill go away, dont worry, youll feel great about it...' itll be easier on the donation front. but i hate that idea.

ick, well after the 13k us i just spent to go to rochester for the worlds next week, i think i may have to bite that bullet after all.

[Timm]

Sorry I was busy this morning and could not post my total thoughts but here you go:

Yea Frog I 100% Timm..Timmy...MDA Hmmmmmmmmm:

I would love to post this on WCJ!

Holly smokes when are we as disabled people going to quit thinking the world needs or must revolve around us simply based on 3 letters ADA!

Maybe he just had a bad day, our maybe he dropped his cell phone in toilet (see his iPhone blog)

http://www.newmobility.com/browse_thread.cfm?id=51&blogID=4

But Mark of all people making remarks about making Timmy look sad and helpless simply based on placing him in an old beat up chair!

Mark E Smith the leader of the free disabled world is posting that the persons chair makes the person?

Please…so does that mean if you’re not rolling in a new shinny, wheel spinning power chair then you’re pathetic?

Maybe Mark should have to pay for his chairs vs. getting the latest and greatest from Pride

I am so so lucky I have a chair that people would die for but the chair is not what defines me, that’s my looks, my smile, and my soft spoken voice (yes soft spoken)

That’s who I am…I stand proud not mater what I ride in…

I was Timmy 40 years ago…

We will always have to work harder at life then others, people will always laugh, smirk, point and stare that will never go away!

But for the bad and mean out there nice people are there too.

We all give because it makes us feel good, the kid at the store that is short on change and cant buy a soda, someone at a ball game that can’t afford a ticket, walking by the homeless and you toss a few dollars.

We do it because.

Besides ever been to an Ability Expo, Med Trade shows etc…I find it funny Mark Smith don’t forget from Pride Mobility Products who like the Permobile and Invacare have built a Nitch Market built on parent guilt!

Timmy is not in a beat up chair looking helpless he looks like he just meet Xibit (rapper on Pimp my ride) and is sporting the latest mini chair in purple, candy pink, leopard skin seat print and spinner!

Parents of disabled children share a terrible guilt so they will go to any means to make there children fit in!

Wonder how much money from MDA purchases has gone in to the Pride deep pocket book!

MDA as I posted is not with out it faults like any Organization you have overhead, salary employee etc:

But MDA does give $2000 every 5 years for power chairs purchase, $500 a year for repairs: Put endless kids through camp and camp is not about just kids it’s about respite for the parents who never get a break.

MDA provides a clinic for FREE medical direction along with a ton of case workers to guild people through life changes.



I think I will be sending Mark and iPhone:

http://www.newmobility.com/browse_thread.cfm?id=51&blogID=4

So he can make a call to Jerry Lewis this weekend….”Hi this is Mark E Smith…ya you have heard of me? I am the Wheelchair Superstar…here is my $20.00 can I get some change back? And next year if you’re not busy maybe we could do a Cerable Palsy telethon..We don’t get any help!’

[Ric]

So he can make a call to Jerry Lewis this weekend….”Hi this is Mark E Smith…ya you have heard of me? I am the Wheelchair Superstar…here is my $20.00 can I get some change back? And next year if you’re not busy maybe we could do a Cerable Palsy telethon..We don’t get any help!’

ROFL :014:

[Lola]

i thought the above quote was very funny too, hehehehehe :D :D :D

hugs, lola

[linda]

i wont comment on marks blog.
but i will comment on one of the other bloggers there. the question was asked -- how much does research cost? (paraphrasing )

my mda clinic dr here in wa state is Dr. Greg Carter -- head honcho of MDA/ALS.

i asked him a couple of yrs ago - just how much $$ goes toward research as opposed to other things the MDA provides.

"23c of every dollar is allocated to research alone" was his answer.

you guys do the math. for every dollar donated - only 23c (at that time) was being resereved for research of all the NMDs.

thats like trying to stop a bullet with tissue paper, for gods sake!

so whether, timmy,joey,susie,karen -or whoever is shown in a ratty old wchair-
just remember -- if it takes those tactics to help someone like me get financial assistance from MDA to get a better looking wchair/powerchair --then let it be done that way. who cares....

im hoping that the pennies for research has gone up. but, still - no cure/treatment will be had in my lifetime. nope...
for 40 yrs - all ive heard is ---"another 10 yrs and this disease will be cured!"
riiight....

hugs
linda :)

[rob]

"23c of every dollar is allocated to research alone":012:

The other 77 cents goes to new tires, new arm rests, new seat cushions, new and improved seat backs, blah blah, blah blah blah.... oh, and your clinic visits.

HERE WE GO AGAIN... :019:

I for "1" am VERY happy with what MDA does do...

[linda]

ummm no -- the other 77c doesnt go to all that . first things first --- HUGE salaries.

over on the fshsociety bbs, every time this yr, this debate comes up and im neutral to it.

if want to really know how the MDA uses, disperses and "gives" -- im sure someone will post about it.
go to --- www.fshsociety.org. then find the link for the bbs.

ive learned over the yrs -- ive been treated very well by the mda @ clinic- but i only go about once a yr or two. i self maintain. mda has always paid for my clinic visit and transportation to/from there.
cant complain.

my information is hearsay only -- if one wants actual facts -then one needs to go get 'em!!!

hugs
linda :)

[wcman]

According to the Ragged Edge (http://www.ragged-edge-mag.com/mar98/telethn.htm):

The MDA reported that in its 1995 fiscal year, it paid Executive Director Robert Ross a salary of $300,000. Five staff members make over $100,000 per year (Gerald Weinberg, Director of Field Organization, makes $230,000 a year). Fifty-nine employees were paid over $50,000 per year.

According to the American Institute of Philanthropy's report, the MDA spent 69-74 percent "on charitable purpose" that year. That's a phrase the AIP uses in its reports. It's "the portion of total expenses that is spent on charitable programs. In AIP's view," says its report,. "60 percent or greater is reasonable for most charities."

According to AIP, it cost MDA $22-28 to raise every $100. AIP says that "$35 or less to raise $100 is reasonable for most charities." The AIP gave MDA a "Grade B" - Good.

This is not unique to the MDA. All the major charities pay big bucks to the leadership. Personally, I think that money can still be raised by showing successful cripples. I dislike the whole pitty thing that many disability related organizations use to raise money, not just MDA. Besides, when I send money to the MDA, I don't want it used to "pimp" a ride.

[Sled Dawg]

The reference of Timmy, the MDA Poster Boy, may well be just another dig as there has never been a poster child for the MDA, named Timmy. I Googled It!

My opinion of Mark E. Smith is best unsaid.

Sled Dawg

[Pete]

The reference of Timmy, the MDA Poster Boy, may well be just another dig as there has never been a poster child for the MDA, named Timmy. I Googled It!

My opinion of Mark E. Smith is best unsaid.

Sled Dawg

Perhaps the Timmy (http://www.southparkstudios.com/show/display_char.php?id=62) reference is a dig at South Park (http://www.southparkstudios.com/). :)

[Dunric]

As one who has ALS as myself, I'm sure others in my situation find that this is one expensive ailment requiring a lot of different technology along with a lot of patience and a bit of innovation.

I never have received any assistance from the MDA yet, but as my speech eventually fails, I hope they might come to my aid for some sort of speech augmentation device. I've tried coding a few and use my Mac laptop for speaking phrases when people have trouble understanding what I'm trying to say but everything must be typed out in full.

Apple has a great speech engine but all the great communication programs run on Windows. :(

As for wheelchairs, I never really thought about it as my manual chair has really fell behind my needs. I've lost plenty of weight since my Dx and the 20" width seat and frame really make it hard for me to be properly positioned. There is also no headrest. I wish I could just swap a chair for a chair as I still keep this one in good repair when my power chair goes in for service, but thanks to the Medicare/Medical budget crunch, trying to get a new manual chair after getting a power chair only a year ago is pretty much impossible.

[Timm]

I wonder if Mark donates? :dft012:

[JenS]

Did anyone catch Jerry Lewis' anti-gay slur?
"Oh, your family has come to see you. You remember Bart, your oldest son, Jesse, the illiterate fag," Lewis said, as he apparently caught himself and ceased the gag in mid-sentence, turning on his heel away from the camera"
Quite the spokesperson for MDA. This coupled with recent remarks where he stated 'Merv Griffith deserved to die' makes me wonder what he says off camera and when not being interviewed. I know in the past he has made comments about pitying the cripples. If you google some of his remarks you will see that Lewis himself has played the pity the poor children in an attempt to drum up more support.
I for one am grateful that a person such as Christopher Reeve was able to be a positive spokesperson for Spinal Cord Injuries, Dennis Byrd and Marc Buoniconti have also been involved in finding a cure and funding research. I don't ever recall hearing any of them say pity the people with SCI, or they should stay home.

[Lola]

I for one am grateful that a person such as Christopher Reeve was able to be a positive spokesperson for Spinal Cord Injuries, Dennis Byrd and Marc Buoniconti have also been involved in finding a cure and funding research. I don't ever recall hearing any of them say pity the people with SCI, or they should stay home.

i 2nd that! :)

hugs, lola

[Davey]

i 2nd that! :)

OK, I'll just have to 3rd it ;).

-- David

[wildbill]

Well I just can't sit back any longer. I am the lucky one they found a so called cure for Pompe's which I have. Its a cure of sorts because you have to take it the rest of your life don't get me wrong its a great thing but my problem is it coats 50,000 per month and no one can pay for it. I don't know any Pompe's patients with a pot to piss in let alone pay for this enzyme. Insurance paid for a short time the Hospitals won't even infuse it because they are afraid of getting stuck for a bill so here we are with a cure or a missing enzyme replacement that allow us to get relief and improve our lives but no one can afford it! All I can say is thanks but no thanks if and when we all get cures are we going to be able to afford it?? Something is very wrong with this picture.
I do understand that 650,000 a year is a huge amount of money I have already been through almost that much but the game is over no more money. BTW MDA has not put one penny into the research or the cure they said it was to rare to waste there money on and I do agree to a certain extent because do you realize how many wheelchairs or part that would pay for?? We all have to live within our means so I do understand. At this price even Oprah would be broke in 10 years .
So I ask what do we do and what is wrong with health care when only the Rich can survive. Iam done Thanks for your time!

[FROG]

Hey Wildbill, I don't mean this in a bad way, but, your numbers don't add up very well. $50,000 a month adds to only $600,000 per year. Your math also indicates that you think Oprah is worth only $6,500,000. She makes more than that in an average month. Never the less, I see your point that even with good insurance we are unable to receive some forms of medical treatment.

[Pete]

Is it that expensive to make, or is the pharmaceutical company just trying to make more megabucks.