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Hi everyone

Again I am asking for pictures of people affected with SMA. This time I am

compiling a loanable CD to anyone in Canada that would like it for fundraising

purposes. I still have some of the pictures some of you sent me to use for my

fundraiser, but I need approval to use it for this purpose

This is strictly a Canadian project for fundraising for Families of SMA Canada.

It will not be an easy task to get enough pictures so please say yes and help us

out. If you could also give us a little blurb about the person that is or was

affected, that would be fantastic.

Also, if you are in contact with other Canadians affected with SMA, please pass

along this message.

Thanks for taking the time,

Susi

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yeah, i'd like to know more about the content so i can decide if i want to

contribute my photo. i've been used a lot in fundraising campaigns only to

feel exploited by the use of sympathy, scare tactics, pity and other such

gimmicks to provoke people to give money. i haven't felt good about much

of the sma fundraising propaganda. tell us more about the fundraiser.

thanks!

alana

At 12:21 PM 5/11/03 -0400, you wrote:

>whats the idea with having a CD full of pictures for fundraising? just

>curious......

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The idea of pictures is simple, if people understand SMA and who it affects

they are more apt to donate to research. In March, I had a fundraiser where

I hung 100 angels from the ceiling of a hall. I sold the angels off for $20

each. Attached to each angel was a picture and bio of a person born with

SMA. The idea was for people to get on a more personal level/ understanding

of living life with SMA. I had children, adults living with sma, and people

that have passed on. This is the reality of this disease. Many people told

me afterwards how much they liked getting " in touch " on a personal level.

It was successful. At the end of the evening, we had raised $15,300.00 for

research. The fact of the matter is, if we don't put forth effort to get

the money, what will the researchers have to work with?

I'd be happy to answer any more questions about the project.

Susi

Re: SMA pictures

> whats the idea with having a CD full of pictures for fundraising? just

> curious......

>

>

>

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Dear Susi,

I respect you for what you have done ! You may use my

daughter's previous photo. Regards, Mee-Ling

--- Susi Vander Wyk <dehoam@...> wrote: > The

idea of pictures is simple, if people understand

> SMA and who it affects

> they are more apt to donate to research. In March,

> I had a fundraiser where

> I hung 100 angels from the ceiling of a hall. I

> sold the angels off for $20

> each. Attached to each angel was a picture and bio

> of a person born with

> SMA. The idea was for people to get on a more

> personal level/ understanding

> of living life with SMA. I had children, adults

> living with sma, and people

> that have passed on. This is the reality of this

> disease. Many people told

> me afterwards how much they liked getting " in touch "

> on a personal level.

> It was successful. At the end of the evening, we

> had raised $15,300.00 for

> research. The fact of the matter is, if we don't

> put forth effort to get

> the money, what will the researchers have to work

> with?

>

> I'd be happy to answer any more questions about the

> project.

> Susi

>

>

> Re: SMA pictures

>

>

> > whats the idea with having a CD full of pictures

> for fundraising? just

> > curious......

> >

> >

> > [Non-text portions of this message have been

> removed]

> >

> >

> >

> >

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what is the reality of this disease?

what sort of things are put in the bios?

linda

Re: SMA pictures

>

>

> > whats the idea with having a CD full of pictures for fundraising? just

> > curious......

> >

> >

> >

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What's the name of the CD? What is the content of the CD cover and

promotional material about the CD?

At 07:42 AM 5/12/03 -0700, you wrote:

>Hi Susi....what a great idea,,,,,I sent you pics of

>Mia from my aol account and a short bio......good luck

>Stacey

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Thank you Mee Ling!

Susi

Re: SMA pictures

> >

> >

> > > whats the idea with having a CD full of pictures

> > for fundraising? just

> > > curious......

> > >

> > >

> > > [Non-text portions of this message have been

> > removed]

> > >

> > >

> > >

> > >

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We all know what the reality of the disease is, even though people aren't

affected mentally, it is progressive, people with sma are out there living

life with a disease that has no cure or even treatment. Young children are

dying from it as well as older people. The faster we get the money to the

researchers, the faster they can work to stop it. We can sit by and

contemplate life the way it is, or we can actively get out there and do

something about it. It is on our own shoulders to do it. When Holli was

diagnosed, we vowed that we weren't going to sit by, we were going to do

everything we can to help her get the most from life, and that is not just

daily physical, mental and emotional needs being met, that is helping to

find a cure or treatment.

What is in the bios is anything you want to say.

Most people put in their age, type of sma, the things they like to do,

occupation. Anything you want to help people understand what makes you,

you.

Susi

Re: SMA pictures

> >

> >

> > > whats the idea with having a CD full of pictures for fundraising? just

> > > curious......

> > >

> > >

> > >

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This is simply a plain covered CD, lent out to people that want to raise

awareness or funds for SMA research. Mostly the people that would want this

will be someone that has sma or has a family member born with the disease.

It would get returned to us after they are done with it.

Re: SMA pictures

> What's the name of the CD? What is the content of the CD cover and

> promotional material about the CD?

>

> At 07:42 AM 5/12/03 -0700, you wrote:

> >Hi Susi....what a great idea,,,,,I sent you pics of

> >Mia from my aol account and a short bio......good luck

> >Stacey

>

>

>

>

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Hi

I agree with you on your points. As a child if an angle was needed for

something like when I was in Brownies and we were doing something or

sponsored it was always focus on me cuz i am the 'special' one with headlines

of brave, or victim etc. Of which i am neither. I do hold i WILL use what i

have got in life, and that includes other peoples assumptions about me to get

what i want/need classic example being that at New Year in Birmingham all the

bars were full and me and my friends couldnt get in anywhere until i went and

asked a doorman if he would help us, he didnt do it because im charming and

witty with above average sex appeal - no he did it cuz he felt a level of

pity and uncomfortableness around me which i knew he would but it served to

my advantage. But no i would not submit to photos or stories of myself ive

had that at work already they want to use the fact im a government employee

to show off how good it all is but if that ever happened id want to write the

article and have complete control - so therefore its never gonna happen.

What i need more than being labelled is for people to truely not see anything

but me because the sma does not define me yet many think it does...if that

makes sense.

xx

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i think the reality of SMA varies from person to person. for example my

reality of SMA would be very different if i had the financial resources of

christopher reeves! i am a bit uncomfortable when it is often said we are

not affected mentally, what has that got to do with anything?? i often sense

a sort of hierarchy in relation to disabled people with people who are

affected mentally being ... well guess where. are bright people more

deserving or tragic than stupid people?

i am acutely aware of the possibility of personal story/photo fundraising

prostituting us to pity. as a child i was manipulated into this despite all

my best efforts. it seemed every time i got into our local newspaper i was

labeled brave! i got an interview at oxford university through a local

scheme to get more working class people in and even the headline for that

was 'brave linda oxford bound' when i had not even spoken to the reporter

but a photo had been taken of myself and another student who had got

through. he needless to say got no mention other than his name yet he may

well have been braver than me!

what precautions are you taking to avoid this type of thing?

i am also interested in knowing how other adults with sma feel about this,

under what conditions would they submit their photo, and whether they too

look back with regret about how their image may have been used as a child

cheers

linda

Re: SMA pictures

> > >

> > >

> > > > whats the idea with having a CD full of pictures for fundraising?

just

> > > > curious......

> > > >

> > > >

> > > >

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