Friday, August 31, 2007

Center for Excellence (and request for letters)

ON THE EDGE - The Whittemore Peterson Institute for Neuroimmune Diseases.

By Pat Fero

August 20, 2007

I am sitting on a curb underneath a lovely shade tree located in
narrow parking lot behind a medical science complex at the University
of NV Reno medical school. My husband Bruce is scouting the perimeter
in hopes of finding someone to ask if this is the right construction
site for the Whittemore Peterson Institute for Neuroimmune Diseases (WPI).

I look in the distance to see homes on brown hills. To my left is a
mountain, but not as high as Mt Rose, which is close to Incline
Village and Sierra Medical, the location of Dr. Dan Peterson's
clinic.   In front of me, within two car lengths and as far as I can
see is brown red dirt, rocks, and flat gravel roads. Occasionally a
white dump truck drops a load of dirt. What are they doing?  Is this
the future home of the Nevada Institute of Molecular Medicine?

I sense movement behind me. A familiar looking man comes through the
door to the parking lot. Imagine that. I stop him to confirm that I
am in the right spot. SO, YES INDEED…. this is the institute and off
to my right will be the wing housing is the WPI. The entire building
will cost 74 million dollars. (I met Tom Kozel, chair of immunology,
in September of 2006 at a WPI fundraiser.) I tell him that all eyes
are on RENO. Dr. Kozel comments that it is a massive building project
with a projected completion date of 2010. Just a few months ago, this
was a 70 foot ravine lined with bramble and rocks.  He moves on to his car.

I dreamweave about filling that enormous hole. It feels like my long
journey with CFS. I think about the hundreds of thousands of people
hoping for a better quality of life through improved medical care
that ultimately comes from better research.

Another white dump truck unloads dirt. How much dirt does it take to
fill 200 yards, by 100 yards, by 70 foot deep? (Huge and inaccurate
guess!)  I am in that truck and have been backfilling for years,
trying to create something from nothing.  I think…what if the work
they do at the WPI reveals the cause of Myalgic Encephalomyelitis.
YES!  They find markers and tests and treatments that can not only
help us feel better and save lives, but get us out of this time
consuming and hostile war with local medical people, with government
groups and among our own. What if?

Leaving my computer bag and water, I walk onto the dirt and over
piles of stone way to the right so I can stand on the spot where WPI
will stand in 3 years. I take pictures, and then start back. Someone
is looking into my bag and I start to wave and shout, but I am too
short and too far away for the man to hear me. I start to run in the
92-degree heat. "HEY" Finally the guy sees me and yells back, " I
thought someone forgot their stuff."

I am huffing away and feeling rather faint. I went farther than I
thought and I forgot about the heat and the valuables I left behind.
Once I recover a bit and drink ALL the water left, I chuckle and pull
out the laptop to write the paragraphs above.  I am crying, too; well
sniffling… I want people to know how much hope is riding on the WPI
as the number one research facility in the United States for ME and
CFS and the other diseases scientists intend to study.

Bruce returns. He talked to a construction guy and it turns out a
chain of trucks, left to right, is filling and dumping dirt to close
up the earth where the Institute will be build. He goes off to take
more pictures.

Pictures are at (See the Link: Whittemore  Peterson
Institute for Neuroimmune Disease)

On the Edge: The Whittemore Peterson Institute for Neuroimmune Diseases
Part Two
August 29, 2007
By Pat Fero

I researched the partnerships and collaborations and a bit of history
about the Medical School in Reno. Five major buildings form the
medical school complex. A major goal of University President Marvin
Glick, PhD (Chemistry  UW Madison) is to create a larger presence
outside Nevada for the research and training facilities the Reno
campus has to offer. Dr. Glick is most interested in academic
training for all fields as he is personally committed to topnotch
education for all students, especially those seeking advanced degrees.

To expand the Reno campus is a huge undertaking. Construction sites
and new facilities dot the campus. It appears that Nevada is
committed to generating vast sums of money to support programs and
increased faculty. In addition, expansion means building partnerships
and collaborations outside of the University.

John A. McDonald, M.D., PhD (Duke University, Biochemistry  Rice) is
Dean of Medical Sciences. Aside from this, in 2006, Dr. McDonald was
appointed to a new Nevada State Commission on Medical Research and
Health Care.  Dr. McDonald oversees planning (Small word  Big job)
for the Center for Molecular Medicine (CMM). This is a collaboration
among the Medical School, the Nevada Cancer Institute, a private
non-profit, and the Whittemore Peterson Foundation, also a private non-profit.

As I learn about this, I think about the numbers of people working on
the CMM, the money, the meetings, the negotiations and those who work
within these entities. I wonder if Dr. McDonald is aware that
thousands of people with ME and CFS and FM and other Neuroimmune
Diseases are watching and waiting for the completion of the CMM and
within it, the Whittemore Peterson Institute?

I feel sure that Dr. McDonald is not aware of the huge interest among
patients and scientists and Medical Professionals.  I imagine he is
busy all the time and when he goes to a planning meeting, a
roundtable of key people work through problems.  People understand
the Nevada Cancer Institute because all of us have been hearing about
cancers of one kind or another since we were born. We have cancer
centers in our communities. However, do people understand Neuroimmune
Disease? I don't.

Here is the plan. Would you please write a letter to Dr. McDonald to
thank him for his interest and work on the Whittemore Peterson
Institute for Neuroimmune Diseases? Bags of mail, BAGS of mail tell
people that what they are doing is significant. E-mail does not count
because if you are reading this, you know that you can get 100 E
mails a day and when busy, you must discard 75.

If you are an academic, a scientist or a medical professional,
especially international, your letter would be like a gold bar in a
mailbag. Please think about the possibilities for a new state of the
art research, training and clinical center in 2010.  It's all good!
You know how thankless a job it can be to attend planning meetings to
overcome obstacles and work on endless details. Please write a letter
to Dr. McDonald and if you are also sick, too, you might mention how
important such a center would have been before you became too ill to work.

If you have ME or CFS or FM, please, please get a handwritten letter
out to Dr. McDonald. You can give your former career, how many years
sick and just say thanks on behalf of all the patients you know in
your community. Ask your family members to write, too. I plan to ask
my 82-year-old mother to write a letter. Despite her own failing
health, she will do it if I can get the envelopes, address the
envelopes and get the stamps ready.

Bag of mail, 2 bags of mail, How about 3?

John McDonald, MD PhD
University of Nevada School of Medicine
1664 N. Virginia Street (0332)
Reno, Nevada 89557

If you can, please cc the President of the University:

Milton Glick, PhD
President - University of Nevada
1664 N. Virginia Street (001)
Reno, NV  89557

This is a personal request. I want a lot for us.J)  The plans are
made, the building is going up, and I want the message LOUD and

* * *

Karen here.

This center will be a godsend.  The only two CFS specialists here retired, so patients are stuck with only doctors we need to educate before they can treat us.  After dealing with doctors who don't know and don't care and won't read what they're sent, I'll gladly take Amtrak up to Reno to be treated by someone who knows what he's doing.

Please, take a moment to write the letter Pat asks for.  Handwritten would probably have a better chance of standing out and being read, but please don't let that deter you from writing if all you can manage is typed. 

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