Re: My opinion on celebrity spokespeople...

[Guest guest]

Unfortunately, our society praises celebrity. No one wants to listen

to a common-face talk about their issues. When a celebrity brings

light to the issue, it becomes an obsession of everyone who obsessed

over celebrity and that particular person.

It's very sad that we as people cannot care about anything unless we

are personally touched or have a pretty face and well-known name to

connect it to.

<3 Kendra

>

> Okay, so maybe I am the only person who feels this way, but WHO

REALLY CARES

> that Ty is linked to SMA and should become a spokesperson for the

disease!?! I

> have yet to fully understand why having a celebrity spokesperson is so

> important to various organizations, especially when a vast majority

of those

> spokespeople are involved only to the extent that their face is

associated with the

> cause. They are not on the " front lines " everyday fighting all the

BS, trying

> to get much needed help and involvement from funding sources to

assist in

> supporting/finding a cure. They are not dealing with families on a

day to day basis

> who are giving their all to keep their kids happy and healthy, nor

are they

> mourning with the families who recently buried their young child who

never even

> had the opportunity to taste life. It truly irritates me that so many

> celebrities have a tendency to get involved with a cause (SMA, MS,

AIDS, etc.) only

> when it personally affects them, and many willingly admit not giving

the matter

> a second thought before diagnosis, etc.

>

> I don't know, maybe I'm wrong and am being too critical. Regardless, I

> personally feel the SMA Community has many celebrities within

itself, just look at

> Audrey L., S., and the huge number of volunteers under their

wings, who

> all do above and beyond what many ever even see. The only difference

is that

> their faces aren't plastered all over the media circuit! Am I nuts

on this

> issue, or does anybody see where I am coming from?

>

> Amy M. Marquez

> Spinal Muscular Atrophy (SMA) - Type 1

> Wife to Steve - Married October 17, 1998

> Mom to le Coral - Born July 19, 1999

> Mom to Harley Jasmine - Born March 9, 2004

>

>

>

[Guest guest]

I see where you're coming from Amy but think about our culture. We don't

typically get involved with something until it affects us or someone we love.

Why should a celebrity get involved as an activist for a disease that they've

never *experienced* when no average-Joe (except !!!! Love you honey!)

would? Also, once a celebrity uses their pull with the media word gets out. More

people knowing about a disease = more funding, not only private but governmental

as well. Need I mention ALS aka Lou Gehrigs disease? SMA and ALS are a whole

lot alike but because a celebrity had ALS everybody has heard of it.

In my opinion Audrey and ARE stars, but go ask a stranger on the street if

they've ever heard of either of these amazing women. Chances are that the answer

will be no. Ask the same person if they've heard of Ty or Mr. or any one

of the desperate housewives and the answer is going to be yes about 99% of the

time. Am I making any sense? *LOL*

I definitely don't think you're crazy. In *my* ideal world we wouldn't NEED a

celebrity spokesperson because everyone would do the right thing and fund

research for SMA at the levels we need it. In the world we have to live in

though.... we'll just say it's less than perfect

Until eutopia is born I'm thinking we should just play the game and find a

pretty face to front our cause *LOL*

Hugs

Jeni

Ames24@... wrote:

Okay, so maybe I am the only person who feels this way, but WHO REALLY CARES

that Ty is linked to SMA and should become a spokesperson for the disease!?! I

have yet to fully understand why having a celebrity spokesperson is so

important to various organizations, especially when a vast majority of those

spokespeople are involved only to the extent that their face is associated with

the

cause. They are not on the " front lines " everyday fighting all the BS, trying

to get much needed help and involvement from funding sources to assist in

supporting/finding a cure. They are not dealing with families on a day to day

basis

who are giving their all to keep their kids happy and healthy, nor are they

mourning with the families who recently buried their young child who never even

had the opportunity to taste life. It truly irritates me that so many

celebrities have a tendency to get involved with a cause (SMA, MS, AIDS, etc.)

only

when it personally affects them, and many willingly admit not giving the matter

a second thought before diagnosis, etc.

I don't know, maybe I'm wrong and am being too critical. Regardless, I

personally feel the SMA Community has many celebrities within itself, just look

at

Audrey L., S., and the huge number of volunteers under their wings, who

all do above and beyond what many ever even see. The only difference is that

their faces aren't plastered all over the media circuit! Am I nuts on this

issue, or does anybody see where I am coming from?

Amy M. Marquez

Spinal Muscular Atrophy (SMA) - Type 1

Wife to Steve - Married October 17, 1998

Mom to le Coral - Born July 19, 1999

Mom to Harley Jasmine - Born March 9, 2004

[Guest guest]

> except !!!! Love you honey!

Thanks, Jeni! Reading things like this makes my day!

(((HUGS))) to you, h and Krystan (and that cutie husband of

yours!)

> Okay, so maybe I am the only person who feels this way, but

WHO REALLY CARES

> that Ty is linked to SMA and should become a spokesperson

for the disease!?! I

> have yet to fully understand why having a celebrity

spokesperson is so

> important to various organizations, especially when a vast

majority of those

> spokespeople are involved only to the extent that their face is

associated with the

> cause. They are not on the " front lines " everyday fighting all the

BS, trying

> to get much needed help and involvement from funding

sources to assist in

> supporting/finding a cure. They are not dealing with families on

a day to day basis

> who are giving their all to keep their kids happy and healthy,

nor are they

> mourning with the families who recently buried their young

child who never even

> had the opportunity to taste life. It truly irritates me that so many

> celebrities have a tendency to get involved with a cause (SMA,

MS, AIDS, etc.) only

> when it personally affects them, and many willingly admit not

giving the matter

> a second thought before diagnosis, etc.

>

> I don't know, maybe I'm wrong and am being too critical.

Regardless, I

> personally feel the SMA Community has many celebrities

within itself, just look at

> Audrey L., S., and the huge number of volunteers under

their wings, who

> all do above and beyond what many ever even see. The only

difference is that

> their faces aren't plastered all over the media circuit! Am I nuts

on this

> issue, or does anybody see where I am coming from?

>

> Amy M. Marquez

> Spinal Muscular Atrophy (SMA) - Type 1

> Wife to Steve - Married October 17, 1998

> Mom to le Coral - Born July 19, 1999

> Mom to Harley Jasmine - Born March 9, 2004

>

>

>

[Guest guest]

Amy-All due respect - yes the " leaders' iof the SMA

organizations - and all of the friends & family

involved with all of the amazing fund raising, etc. -

are all fantastic and true heroes in my opinion. That

aside, a so-called 'celebrity' spokesperson does one

thing, and one thing alone. AWARENESS. 99.99999% of

the US population ( & probably higher in terms of the

world) have not only NO idea what SMA is, they've

NEVER heard of it! I was one of those people, as were

probably most of people in this group. Ty - or

whomever - can do one very important thing by making

Spinal Muscular Atrophy something that more people

have heard of or know about. In my opinion, the MAIN

reason SMA still lingers in relative anonymity - and

thus damn near the bottom of NIH research funding

priority is purely due to lack of awareness.

When you can catch lightning in a bottle - you do.

Or, as Bill Murray character's says in the 80's flick

Ghost Busters... " Ray, if someone asks if you're a God

- YOU SAY YES! "

People - for whatever reason - love these makeover

shows - personal or room or house. And the #1 celeb

in this regard is this Ty guy. Wow - would that be a

big kickstart...Mitch

--- Ames24@... wrote:

> Okay, so maybe I am the only person who feels this

> way, but WHO REALLY CARES

> that Ty is linked to SMA and should become a

> spokesperson for the disease!?! I

> have yet to fully understand why having a celebrity

> spokesperson is so

> important to various organizations, especially when

> a vast majority of those

> spokespeople are involved only to the extent that

> their face is associated with the

> cause. They are not on the " front lines " everyday

> fighting all the BS, trying

> to get much needed help and involvement from funding

> sources to assist in

> supporting/finding a cure. They are not dealing with

> families on a day to day basis

> who are giving their all to keep their kids happy

> and healthy, nor are they

> mourning with the families who recently buried their

> young child who never even

> had the opportunity to taste life. It truly

> irritates me that so many

> celebrities have a tendency to get involved with a

> cause (SMA, MS, AIDS, etc.) only

> when it personally affects them, and many willingly

> admit not giving the matter

> a second thought before diagnosis, etc.

>

> I don't know, maybe I'm wrong and am being too

> critical. Regardless, I

> personally feel the SMA Community has many

> celebrities within itself, just look at

> Audrey L., S., and the huge number of

> volunteers under their wings, who

> all do above and beyond what many ever even see. The

> only difference is that

> their faces aren't plastered all over the media

> circuit! Am I nuts on this

> issue, or does anybody see where I am coming from?

>

> Amy M. Marquez

> Spinal Muscular Atrophy (SMA) - Type 1

> Wife to Steve - Married October 17, 1998

> Mom to le Coral - Born July 19, 1999

> Mom to Harley Jasmine - Born March 9, 2004

>

>

> [Non-text portions of this message have been

> removed]

>

>

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