[K3PZN-List] Thank You

Fri Jan 14 21:12:38 EST 2005

Fellow Members of the Carroll County Amateur Radio Club

Thank You for taking the time to sign the petition asking for research funds
for these Orphan Diseases (Myeloproliferative disorders (MPDs)). It is bad
enough to have a chronic blood related illness without being in a situation
where the Doctors know less than they do about AIDS. And of course, the
money spent on MPD research is next to nothing.

If you didn't get a chance to read the information at the web site or sign
the petition, it is still available when I looked a little while ago (Friday
evening), in spite of the information we were given a few days ago.
http://www.petitiononline.com/CA108671/petition.html

I was gratified at seeing the many names of my friends and family and fellow
HAMS that had responded. Thank You again.

Sincerely,
Frank

 -----Original Message-----
From: Frank Rodski [mailto:fcrmisc at verizon.net]
Sent: Tuesday, January 11, 2005 2:46 PM
Subject: Friends & Family of Frank Rodski Please Read now time is of the
essence
Importance: High

Tuesday, January 11, 2005

Hello Family and Friends
Time is of the essence. I need your help.
 As most of you all know, in 1999 I was diagnosed with a rare blood disorder
called Polycythemia Vera (PV),  which is one of the Myeloproliferative
disorders (MPDs). It is non communicatable, and not  curable ... at least
for now.   The MPD's are considered orphan diseases and there are no large
government studies or commercial pharmaceutical companies engaged in any
real research. There are doctors at Johns Hopkins, Cornell and one or two
other institutions studying MPD's, but without a lot of funding.

 PV  is  like Leukemia ,which you are all familiar with, except it is the
exact opposite.     Instead of not enough red blood cells,  I have too red
blood cells many making my risk for heart attack, stoke, thrombosis and
organ damage and death ( if untreated) very high.  Even treated, it will
eventually take its toll.   Some consider it  to a form of  cancer as the
blood cells proliferate at a high rate just as other body cells do in a
malignancy.  In some patients, PV will turn into leukemia when all of the
bone marrow is spent.

The bad news is that there is no cure, and of the less than half a dozen
doctors in the U.S. that are considered experts,  none agree on treatment,
or for that matter very few things at all concerning PV.
The good news is there are treatments that can buy time,  but the many
effects of the disease continue to affect ones daily lifestyle.  Because of
these treatments,  I'm still alive almost 6 years after diagnosis when the
expected life span untreated is only 2 years.  Because studies that have
been done were under funded and flawed,  the average lifespan of a person
with PV is estimated  to be 10 to 15 years but not know for sure.  The long
term effects of chemotherapy is not yet known, even though it is possible
that this may be  the treatment of choice.
The letter below is from Robert Tollen who started and runs a Support  Group
on Internet.  Robert is probably the most knowledgeable layman and more than
likely knows more about the disease and has communicated with more affected
people than 99% of all doctors.  I have learned more about my disorder from
the group than I have from my MD or my Hematologist/Oncologist.
I'm not going to repeat Roberts message, you can read it.  A petition was
written In support of NIH and NCI Funding of Myeloproliferative Disorder
Research . As I said, the MPD's are considered rare orphan diseases  (1 in
100,000 persons affected),  so there are no large government studies or
commercial pharmaceutical companies pursuing any real research.  Because of
that lack of research, and the resulting uncertainties in the treatments and
at the advice of my doctor, I have chose not to start chemotherapy, but I
don't know if that is a mistake or not. That is the point of the petition,
to get enough funding to at least in the beginning, determine the best
currently available treatment. Obviously alpha interferon appears to be
working for Robert although he almost died a few months ago.
Please follow this link
http://www.petitiononline.com/CA108671/petition.html  and sign the petition
to help get funding for this group of orphan diseases.
 Time is of the essence as we only have today  Jan. 11 and maybe tomorrow
Wednesday Jan. 12 to act.
PV was only started to be diagnosed in the last 30 or so years. Since we
don't know what causes it  (virus, genetics, environment) or how many cases
there were 50 or 75 years ago, we can't be sure that it won't eventually
work its way out of the "orphan class".   Wouldn't it be nice if we found
the cause and the cure before that happened!
Thanks for reading this message.  Please sign the petition at
http://www.petitiononline.com/CA108671/petition.html and pass along  to your
friends.

Your friend or relative,
Frank Rodski

-----Original Message-----
From: Robert Tollen [mailto:lov2laf at bellsouth.net]
Sent: Tuesday, January 11, 2005 8:24 AM
Subject: LINK CORRECTION A very important petition for MPD
Importance: High

GO TO http://www.petitiononline.com/CA108671/petition.html

Hi, my name is Robert Tollen. I have had polycythemia vera since 1990 at age
42, but I went undiagnosed for about 8 years prior to that. I went on
phlebotomies
every month or so and started interferon alpha 2b injections in Feb 1994
after
5 years. I have been on interferon and phlebotomies ever since. I am now 57.
In 1994 I started the very first MPD Support group with 2 patients. Myself
and
another patient on AOL. Today we have about 2,000 subscribers from 38
countries.
Right now we are at a critical juncture.
We need your help.
Top scientists interested in our diseases are trying to get funding from the
US Government. As great a job that the private foundations are doing, it
will
really take the intervention and backing of the US federal government to get
things funded in a way that we all want to see.
This petition will go offline after Wednesday January 12th.
Please take a moment to click to it and sign it. It is very important. Ask
your
friends and families to sign it.
Robert Tollen, Listowner, MPD-SUPPORT-L
 The goals of the MPD-RC are to:
Establish a multi-institutional international research group entitled the
"MPD
Research Consortium" to coordinate and facilitate basic and clinical
research
dealing with the cellular and genetic basis of MPDs.
Evaluate biomarkers for MPD that correlate longitudinally with known
clinical
parameters and identify novel therapeutic agents for the treatment of MPDs.
. Establish a multi-institutional MPD Clinical Consortium to enable uniform,
high volume sample collection and storage and inter-institutional initiation
and completion of Phase I/II as well as Phase III clinical studies in MPD.
Maintain an interactive website for MPD Consortium investigators, a
sophisticated
international tissue bank and an on-line database that will allow for
integration
of basic and clinical research. This resource will also serve as a source of
information for professional and patient education about Ph negative MPD.
Please feel free to pass this on to friends and family, we need the support
of
the patient base as well as their friends and family.
I would like to thank you in advance for your time and consideration in this
most important endeavor.
To sign follow this link:
http://www.petitiononline.com/CA108671/petition.html
Our MPD-SUPPORT-L web site, http://members.aol.com/mpdsupport, offers
interesting
information on chronic myelogenous leukemia, polycythemia vera, essential
thrombocythemia,
agnogenic myeloid metaplasia, myelodysplasia, and myelofibrosis.
Anyone - patient, family member, or health professional, is welcome to join
our
growing list of subscribers.
Our archives are available for you to research information.
Our MPD-SUPPORT-L web home page site:
http://members.aol.com/mpdsupport
To subscribe to MPD-SUPPORT-L by email, do the following:
Email to: LISTSERV at LISTSERV.AOL.COM
Subject line: blank or just a dash on AOL
Body: SUBSCRIBE MPD-SUPPORT-L John Smith
(Substitute your first and last name for John Smith's)

Please take the time to review our 500+ participant International
Myeloproliferative
Disorders Survey, which can be found in .pdf format at the top of our web
site,
http://members.aol.com/mpdsupport. Any problem accessing this survey, please
write to me at lov2laf at bellsouth.net for help.
You can see archives of our recent daily digests without subscribing by
going
to: http://snurl.com/q47
Any questions, please email me back.
Warm regards,
Robert Tollen,
Listmanager, MPD-SUPPORT-L,
mensabrain at aol.com or my preferred email,  lov2laf at bellsouth.net

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