From: spgreg@mars.lerc.nasa.gov (Greg Macrae)
Newsgroups: misc.handicap
Subject: MDA Funds Distribution
Date: 9 Oct 92 16:12:40 GMT
Reply-To: spgreg@mars.lerc.nasa.gov (Greg Macrae)
Organization: NASA Lewis Research Center
X-Fidonet: Ablenews Conference
Originator: wtm@sheldev.shel.isc-br.com

Index Number: 24768

In article <24756@handicap.news>, Randy.Edwards@f105.n128.z1.fidonet.org writes...
>Index Number: 24756
>
>[This is from the AbleNews Conference]
>
> Via The N.Y. Transfer News Service 718-448-2358, 718-448-2683
> Title: We pity Jerry Lewis' attitude
>
> "We pity Jerry Lewis' attitude"
>  By Betsy Gimbel New York
>
..
>Telethon organizers and the Muscular Dystrophy Association claim
>that the money raised in the event goes toward research to find the
>cause and cure for this fatal disease. But this is not really true.
>Many of the phone-bank staffers agreed with the demonstrators,
>contention that the Lewis Telethon is actually more of a financial
>and publicity bonanza for big business. More than 80 percent of the
>funds raised will in fact go to pay for the telethon's staff and
>operating expenses. In other words, it's really a fund-raiser for
>the telethon, not for the disabled or research.

As someone who has endured the telethon for years, I can fully understand
objections to the pity appeals.  This, however, is irresponsible
journalism, and that bothers me far more.  There is absolutely no
way anyone can prove this 80% number.  The telethon organizers
claim 2% of the funds raised through the telethon support the telethon.
The Combined Federal Campaign which conducts an independent review every
year for compliance with their guidelines and analyzes administrative
costs versus funds raised claims about 42% of funds goes to administrative
costs.  This makes them one of the lowest cost _national_ charities
that meets the CFC requirements.  Furthermore, there have been repeated
complaints from charities that much of what the CFC considers administrative
costs, many charities consider services.  Disagreements on this level are
understandable because the CFC supports over 5000 charitalble agencies and
tries to apply the same standards to all of them.

>telethon. The way things stand now, this money keeps going for
>research year after year, but no cause or cure is ever found.

This claim is ridiculous.  Not only have gene sites been located for
more than 7 of the 40+ disorders grouped as muscular dystrophy, but
the methods developed to pinpoint the causes is transportable to
other disorders.  More than 30 different genetic disorders have been
identified by methods similar to or the same as the methods Hoffman et.
al. developed since the announcement of finding the location of the
Duchenne MD gene.  If anyone disputes the importance of the work MDA
funded, a quick look through the _Citation Index_ is bound to change
your mind.

Jerry's portrayal of disabled individuals as helpless and his continued
use of terms like crippled, wheelchair bound, stricken, etc. still irks
me.  There is no need for it.  You can still play to peoples emotions
without degrading me in the process.  However, let us be fair here.
A lot of the information I have seen distributed about Jerry and MDA
has been fabricated.

--------------------------------------------------------------------
     MacRae                  |       Darting dragonfly...
                             | Pull off its shiny wings and look...
  spgreg@mars.lerc.nasa.gov  |      Bright red pepper pod!
                             |                      -Kikaku
--------------------------------------------------------------------
76.2% of all statistics are fabricated by the person quoting them...
	-quote I saw somewhere (I bet that number was fabricated too.)