|

PERF, The Pulmonary Education and Research Foundation, is
a small but vigorous non-profit foundation.
We are dedicated to providing help for those with chronic respiratory
disease through education, research, and information.
We hope this newsletter is worthy of our efforts.
PERF
BOARD OF DIRECTORS
|
|
Richard
Casaburi, Ph.D., M.D., President
Alvin
Grancell, Vice President
Mary
Burns, R.N., B.S., Executive V. P.
Jean
Hughes, Treasurer
Thomas
L. Petty, M.D.
|
Jeanne
Rife
Alvin
Hughes
Craig
Murga
Barbara
Jean Borak
Brian
L. Tiep, M.D.
Peter
D. Pettler
|
|
- Do you live in the Seattle
area? If so,
you won’t want to miss the Round
Table Discussion on Idiopathic Pulmonary Fibrosis for
physicians and patients on April 27th.
Call Mark Shreve at 888-222-8541 for specific
information. Many
more such Round Table discussions are planned around the
country in the next few months in cities such as Los
Angeles, Chicago, New York etc. We will keep you posted in this newsletter when possible, but
suggest that you call that 888-222-8541 number for specific
dates and places.
Were you one of the millions of people glued to the television
set watching the Winter Olympics?
We followed with interest the “blood doping scandal”
of the disgraced Russian athletes.
Not because of any morbid fascination, but because of the
drug involved. How
many of you noted that this drug, in addition to only being on
the market for only a few months, was something that increased
the athletes’ red blood cells, thus increasing their energy and
exercise tolerance? Now, why do you suppose that increasing their red blood cells
increased their energy and exercise tolerance?
That’s right! It
is because the hemoglobin
in red blood cells carries oxygen!
More red blood cells, means more hemoglobin, which means
increased oxygen and energy.
Does that sound interesting to you?
Does it sound like something that might be of help to you,
as well as those Russian athletes?
Well, that is exactly the thinking of scientists at
Harbor-UCLA. If
it’s good enough for the Russians, it may be good enough for
respiratory patients. Or
rather, it’s the other way around, since this was being
discussed as a possible help for those with pulmonary disease months
before the Olympics. Anyway,
under consideration at the Harbor-UCLA Rehabilitation Clinical
Trials Center, is a major study on the effects of this drug on
the exercise and energy level of patients with COPD whose red
blood cell count is low. Are you interested? Stay
posted for more information on this study a month or two from
now. (Olympic
athletes not eligible.)
LAST CHANCE to
register for CHANGING
TIMES: The Future of Pulmonary Rehabilitation.
There is still time join other doctors, nurses,
therapists and team members at the California
Society for Pulmonary Rehabilitation (CSPR) annual meeting at
Long Beach Memorial Medical Center April 5th-6th.
This two-day meeting is packed
with state of the art information delivered by world-class
physicians, practitioners and scientists.
And the price is
right! Two full days
of informative lectures and 11 CEU’s costs only $150.00. E-mail Mary Burns at perf@pacbell.net
or call (310) 539-8390 today for further information.
- Dr.
Rich Casaburi had another paper published in the prestigious journal Chest,
in which he is acknowledged as occupying the Alvin Grancel-Mary
Burns Chair in the Rehabilitative Sciences.
The first author is Dr. Attilla Somfay, who was a visiting scientist at Harbor-UCLA when
this study was done, but has now returned to Szeged,
Hungary. The
second author is Janos Porszasz MD, PhD who is our new web master.
The name of the paper?
I thought you would never ask.
It is the “Effect
of Hyperoxia on Gas Exchange and Lactate Kinetics Following
Exercise Onset in Nonhypoxemic COPD Patients”. We won’t attempt to give you a synopsis of this
one! Just take
our word that it is a contribution to the science examining
the ways in which oxygen is of benefit to COPD patients who
exercise!
- And speaking of Dr.
Porszasz, he has been working long hours improving the look
and the content of our web site, www.perf2ndwind.org.
Won’t you please take a
look at it and tell us what you think? We really would like your opinion, since our goal is to give
you as much information as possible in a way that you can easily
access. If you are a
patient we do hope that you will tell your physician or pulmonary
rehab team about this site, since it should be helpful to them
also. Our goal is to
provide you with the newest articles on treating respiratory
problems, or at least the abstracts of these articles.
- We have started an additional
feature, giving you a description of the research
studies that you can participate in.
Not only will you help yourself but you also will be
helping others. Besides
the possible benefits of the study itself, there is usually very
generous financial compensation for your time.
Now you do need to be aware that most of these studies, in
order to have scientific validity, are double blinded and placebo
controlled. That is,
half of the participants get the treatment or the medication
while the other half doesn’t and no one, physician or patient,
knows one from the other. This
gives an unbiased result. However,
in all the years of working with patient research at Harbor-UCLA,
I have never met a participant who didn’t feel that it was
worthwhile.
- We have started by listing the
opportunities at Harbor-UCLA
in Torrance, CA but invite other universities to contact us
in order to list the respiratory research that they
are involved with. We
would like to open this up to all
of you across the country, as is part of the PERF philosophy.
So, if you don’t have access to the Internet, get a
friend or relative to open it up for you.
Telephone, write or e-mail us with your comments and
suggestions. Our goal is to make this one of the most valuable sites
on-line for respiratory patients and
the health care professionals caring for them.
Till next time, we leave you with…
"The Irish
Blessing":
MAY THE ROAD RISE TO MEET
YOU,
MAY THE WIND BE ALWAYS AT
YOUR BACK
MAY THE SUN SHINE UPON
YOUR FACE
THE RAINS FALL SOFT UPON
YOUR FIELDS
AND, UNTIL WE MEET
AGAIN,
MAY GOD HOLD YOU IN THE
PALM OF HIS HAND `
|
Newsletter home | Page 1 |
Page 2 | Page 3 | Page
4 | Page 5 |
|