In the military when the bullets come at you on the firing line you better have the
ammunition to fire back or else your nothing but a dead duck. It is no different in regard
to Polio leaders who are constantly on the telephone. Most of us use telephone answering
machines so that we can bunch our return calls all at the same time otherwise we would be
doing nothing else all day but running back and forth to the telephone. We are on the
receiving end all the time and as good old Pres. Truman said �the buck stops here�. We not
only have to have the answers we must have the resources, the ammunition.
Well, in regard to the ammunition, the answers, we seem to be in very short supply. We
have no quick fix but only some patch quilt type of answers to all the problems. We can
offer some limited advice, advice based upon some limited information we have and some
referrals. Period.
This type of response after the many years of problems is nothing short of a disgrace.
When it comes to research as your can see by the report in this bulletin we don�t even rate.
Why is this? Especially since there are somewhere between 500,000 and one million
people suffering from our problem. Our information is that in fiscal year 1993, the National
Institute of Neurological Disorders spent approximately a million dollars on research for us.
That's about dollar a person. In FY 94 they expect to spend the same. Just what is going
on! Maybe we should take up collection, a buck a head and we can double the research.
To help us and our group we went to the Polio Conference in St. Louis and received
valuable information on Polio. However, we will remember for a long time something else
which has little to do with the purpose of the visit. When we arrived at the Polio
Conference area we inadvertently entered into the vendors display area first. To our
surprise the best booth, the one you saw first was secured by the March of Dimes. At the
booth was a very lovely and charming women and we thought that maybe the March of
Dimes was coming back into the Polio picture. The representative did say that she would
try to help us with our needs but, it was also very obvious that their prime objective was
very different. It was simply to try and get from us Polio historical memorabilia (for the
upcoming 40th anniversary of the Salk vaccine?) and nothing else. Well, we don�t think it
succeeded and the talk among some of us at the conference was how little you can depend
on March of Dimes
At the conference we noted how hungry people were for information and realized that
our messages were not getting out. We decided to prepare a Polio yearbook. We also
decided to really find out for ourselves just where the March of Dimes was in regard to
helping us. It only required a couple of letters to the March of Dimes to be informed that
they are �unable to offer financial support� for the yearbook.
Anyway, we struggled to publish the yearbook with our minimal funds and wrote a
preface in it about the high cost due to the absolute lack of help from the March of Dimes.
Then, in small numbers began distributing the yearbook throughout the country. We
decided to concentrate first on those PPSG�s who were associated with the March of
Dimes just to see what their response would be and, if warranted, reverse our opinion.
Well, we received many responses but only one which supported the March of Dimes and
praised them by stating �the local chapter helps our group by funding our newsletter
printing costs.� Now that is just wonderful. We think everyone should write our President
in the White House and insist that he give the March of Dimes a medal for service beyond
the call of duty in regard to Polio.
. We would like to receive your comments, be they pro or con. Just what do you feel,
let us know. It�s your body and your life. To be continued.......