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Subject:
From:
Carlos Mangione <[log in to unmask]>
Reply To:
Carlos Mangione <[log in to unmask]>
Date:
Wed, 9 Oct 2002 06:51:22 -0500
Content-Type:
text/plain
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<<Disclaimer: Verify this information before applying it to your situation.>>

Dear Friends:

I recieved an e-mail from Chaitan Khosla.

See below.

Saludos from Argentina.

Carlos Mangione
Celiac
Buenos Aires

========
De: Celiac Sprue Research Foundation [mailto:[log in to unmask]]
Asunto: Fwd: Fwd: Congratulations


Dear Carlos

Thanks very much for your encouraging letter regarding our ongoing
research aimed at finding an alternative to your life-long gluten-
free diet. Over the past few years our efforts as well as those of
our collaborators have been gaining momentum. Although the development
of a celiac pill will not happen overnight, I can assure you this
is, and will remain, our single highest priority until you have ready
access to a safe and effective pill that allows you to live a normal
life unburdened by significant dietary constraints. In fact, if I
had any doubt in my mind about the worthiness of this goal, your
warm letter (as well as those from scores of other patients and family
members) has made them disappear. Thanks again.

I want to make sure you understand what the Celiac Sprue Research
Foundation is all about. As elaborated on our website (www.celiacsprue.
org), the Foundation is a non-profit public charity dedicated to
the goal of improving the quality of life of celiacs. For the
foreseeable
future, our #1 goal will be to develop a good celiac pill. If you
have read about the process of drug development, then you are probably
aware that it is a long, risky and expensive process. But like many
other serious disorders, medical science is fully capable of conquering
this one too....if there is a strong commitment to do so. And commitment
is what the Celiac Sprue Research Foundation is all about.  The
directors
and advisors of the Foundation are highly qualified individuals who
bring together enormous experience in scientific, clinical,
pharmaceutical,
and legal matters, all of which will be required to bring us to
the finish line. We are also supported in many ways by a small but
growing group of knowledgeable and dedicated volunteers, each of
whom has a personal connection to the disease. And what unites us
all is the unwavering belief that although Celiac Sprue is a widely
prevalent, serious and unmet medical need, it is also a solvable
problem.

As our website outlines, in the near term we will focus on translating
what's already known in celiac and related science into possible
avenues for drug development. One such avenue is peptidase therapy,
which you recently read about. While we are optimistic about its
prospects, and are rapidly mobilizing to test it in the clinic, we
also recognize the intrinsic risks in any single approach toward
a celiac pill, and are therefore developing other alternative approaches
in parallel. Within the next 2-5 years we hope that at least one
such approach yields promising data in preliminary clinical trials,
so as to justify more extensive safety and efficacy studies leading
eventually to a marketed drug.

On January 1, 2003, the Foundation will initiate in-house R&D
operations,
which will ramp up to a group of 10-12 scientists (mostly Ph.D.
level), hopefully by the end of 2003. The efforts of these scientists
will be closely coordinated with those of other academic scientists
in the laboratories of the Foundation's Scientific Advisors as well
as my own laboratory at Stanford. Before too long we also hope to
set up collaborations with pharmaceutical companies who have
complementary
resources that will be necessary to bring a celiac pill to the market.
The entire process will probably take years, so I don't want to
raise false expectations about near-term cures. But you can be sure
that all through these efforts, the Celiac Sprue Research Foundation
will keep the patient, and the patient alone, in mind as it steers
the course.

Carlos, I hope you will consider supporting the Celiac Sprue Research
Foundation in its efforts to give you what you most want with regard
to your disease. For the next two years (i.e. during the period we
ramp up our funding from government, corporate and other non-profit
sources), our drug development efforts heavily depend on contributions
from individuals like you, who have a personal connection to the
disease. While we have no doubt we will eventually get to the finish
line, your precious donation will help us get there sooner. But
regardless
of your ability to donate, you should be comfortable in the knowledge
that the Foundation will do all it can to harness good science for
the purpose of turning a fundamentally new page in the history of
Celiac Sprue. Given that the disease is in our genes, we owe this
to our future generations.

Again, I thank you for your vote of confidence in what we are doing.
It means a lot to us.

Sincerely,

Chaitan Khosla
President,
Celiac Sprue Research Foundation

And

Professor of Chemistry, Chemical Engineering and (by courtesy)
Biochemistry,
Stanford University


P.S. Credit card donations can be made on the Foundation's website,
and checks can be mailed to the Celiac Sprue Research Foundation,
P.O. Box 61193, Palo Alto CA 94306-1193. Also, please contact us
if you can volunteer with fundraising in your local area. Thank you.

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