SMA survey... please help me out!

[Guest guest]

,

I would be delighted to fill out the questionnaire.

Sincerely,

Joe

In a message dated 4/5/2004 6:24:37 PM Eastern Daylight Time,

butterfly@... writes:

Hello everyone,

First of all, I would like to introduce myself to those who don’t know me

(I haven’t been posting much because I’ve been working a lot on this

project)... My name is , and I am a senior undergraduate at

the University of California Berkeley. I’m preparing to do my honors

thesis with the help of Professor Rodolfo Mendoza-Denton in the Psychology

Department. I’m doing a research study looking at the quality of life of

people with Spinal Muscular Atrophy. I am especially interested in people

with SMA because (obviously) I have it myself, and I believe that quality

of life is something that needs to be looked at in a new way.

If you have SMA, are over the age 18, and would be willing to help me out,

participation includes simply filling out questionnaires (which will take

approximately 30-45 minutes). You will get paid $10 for participating as a

token of my appreciation. To participate via the internet, simply email me

and I will send you an individual identification number and a link to the

survey website. Also, if you would prefer, you may participate via US mail

and I will provide self-addressed stamped envelopes for you to return the

completed documents. Simply give me your address by email or phone and I

will send out the packet to you.

Your help would be GREATLY appreciated and hopefully some insights can be

made into what affects the quality of life of people with SMA. Also, if

you know anyone else with SMA that isn’t on the list, could you please

either email me their name and contact info, or pass along this email to

them?

Thanks for your time and hope to hear from you soon!

Best wishes,

butterfly@...

510-409-9414

[Guest guest]

Hello everyone,

First of all, I would like to introduce myself to those who don’t know me

(I haven’t been posting much because I’ve been working a lot on this

project)... My name is , and I am a senior undergraduate at

the University of California Berkeley. I’m preparing to do my honors

thesis with the help of Professor Rodolfo Mendoza-Denton in the Psychology

Department. I’m doing a research study looking at the quality of life of

people with Spinal Muscular Atrophy. I am especially interested in people

with SMA because (obviously) I have it myself, and I believe that quality

of life is something that needs to be looked at in a new way.

If you have SMA, are over the age 18, and would be willing to help me out,

participation includes simply filling out questionnaires (which will take

approximately 30-45 minutes). You will get paid $10 for participating as a

token of my appreciation. To participate via the internet, simply email me

and I will send you an individual identification number and a link to the

survey website. Also, if you would prefer, you may participate via US mail

and I will provide self-addressed stamped envelopes for you to return the

completed documents. Simply give me your address by email or phone and I

will send out the packet to you.

Your help would be GREATLY appreciated and hopefully some insights can be

made into what affects the quality of life of people with SMA. Also, if

you know anyone else with SMA that isn’t on the list, could you please

either email me their name and contact info, or pass along this email to

them?

Thanks for your time and hope to hear from you soon!

Best wishes,

butterfly@...

510-409-9414

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[Guest guest]

Dear ,

I would be glad to take your survey. I am 56 (the old lady of this

group) and have SMA I/II diagnosed at 2. I graduated Tulane University

in 1969. I hope your project is a great success.

Yours truly,

Pamela Ortego

New Orleans, LA

[Guest guest]

,

I'm also an old lady. I'm 52 (53 in June). I wasn't offically diagnosed with

SMA until I was about 28. At 12, they told my parents that my condition was

neuromuscular. I assume I have Type II.

, where do you come from? I'm from Long Island, New York. How long have

you been in a wheelchair? I've been in a chair since I'm 11. Are you married?

I have never been married, unfortunately.

Hope to hear from you soon.