I have heard just about enough to be very disappointed. Not in you, but in
the fact that I was beginning to give Christopher Reeve a bit of credit in
finally acting like a sensable person with a disability and realizing a bit
the trials and tribulations that we go through to just get through every
day life. I am not sounding bitter, because I am not, it is just that I
have the speech of "super person" he made in the beginning.
I was hoping that he was understanding a bit....but now that you tried to
call and got the total run around, I see his talk was just that talk. We
have all heard it....
It must be nice to be able to afford the best of care, build a totally
accessible house, and fly charted planes donated by corporations...Give me
a break!!!!
Thanks for giving it a shot....
I am so mad at the "Rhetoric" he gave...that it best that I not fire off a
letter just yet..but you can be sure that I will once I have gathered my
thoughts.
Annette
At 01:28 PM 5/7/98 -0500, Valerie Brew-Parrish wrote:
>Hi Annette & everyone else interested in the Christopher Reeve
>Foundation. What a morning I've had trying to ferret out the info all for
>nothing! There is NO MONEY FOR BACK-UP VENTS! Here's the scoop: I called
>the Reeve Foundation at 1-888-771-4673. Before you can take a breath,
>you're bombarded with questions, "zip code," address. etc. I stopped the
>woman and asked about the vents,& mentioned the conversation on Larry
>King Tues. night. She knew nothing about such things. She said Reeve had
>a web site (www.APACURE.COM) that lists lots of agencies that help
>people. It doesn't. She referred me to their customer service #
>1-800-225-0292. It's actually the American Paralysis Assoc. The Reeve
>Foundation said only 3% of the funds go to quality of life issues not 30
>like Reeve said on Larry King. I called APA, they too knew nothing about
>vents. They referred me to the SCI Hotline at: 1-800-526-3456. They were
>pleasant but they didn't know about any agency that helps people obtain
>back-up vents. They will keep checking and call me back tomorrow. I went
>to the Reeve website. The two organizations that received "quality of
>life grants" are the National Organization on Disability($25,000) & the
>National Family Caregivers Assoc.$25,000. (The founder's husband has M.S.
>the wife felt he was a burden because of his disability so their
>literature says. I pitched it in the trash) I then decided to call the
>APA back to find out where all of the agencies were that supposedly
>helped people. They were nice enough to FAX me the list: $25,000 to the
>National Spinal Cord Injury Assoc. World T.E.A.M.'s Viet Nam Challenge.
>$5,000 to Children Affected by Armed Conflict, N.Y. Therapeutic Riding, &
>Shake-A-Leg. That's it! If you want to write to the Christopher Reeve
>Foundation, the address is: PO Box 277, FDR Station, NY, NY 10150-0277
>Perhaps the folks on this list should bombard the Reeve Foundation with
>calls about back-up vents or write a letter to Superman & ask what in the
>world he was talking about!
>Val
>
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