supeman was my favorite -
 

From: Frank Reid

Gene therapy. There are a lot of folks who's systems are compromised,
either from birth or afterwards that would benefit from gene therapy.
My daughter has what could be called "genetic scurvy." The only
treatment for this would be gene therapy.

Without the stem cell
research, her chances of a long life are very slim. This problem,
Ehlers-Danlos syndrome (EDS) is one of a large group of problems that
are termed "orphan diseases."

They are orphaned, because the
researchers put their time in for the most bang for the buck, i.e.
cancer, HIV... One breakthrough in say, collagen gene therapy, could
save thousands with EDS, Marphans, etc.

Wow. That's a tough one. My hunting partner and sometimes fishing buddy lost
two children to Gaucher's Disease, another 'orphan disease'. At the time they
died there was no cure, but several years later, a cure was found, but it cost
around $100,000 a year for several years, not an option for many people.

When a politician makes life or death policy decisions for your family
(specifically death) based upon getting a strong voter turnout in his
favor from some factions, he/she doesn't get my vote.


As I said before, I disagree with Bush on the stem cell issue, but even if the
research was funded, the work would still go toward the "bang for the buck"
diseases, the decision then being made by the executives in the drug companies.

I think Bush will lose more votes than he gains on this issue.

Hopefully a breakthrough will be made in time to help your daughter.


George Adams

"All good fishermen stay young until they die, for fishing is the only dream of
youth that doth not grow stale with age."
---- J.W Muller

supeman was my favorite -
 

supeman was my favorite -
 

supeman was my favorite -
 

In article , says...
Peter Charles wrote:
Finally, don't equate cloning and vivisection to stem cell research
using aborted fetus tissue, for that too, is over-the-top. What will
you equate it to next, live experimentation on humans?

Why is it over the top? At least give credit, as Scott does, to
the realities of the beliefs behind the opposition. If someone
believes abortion is really equivalent to murder, wouldn't you
_expect_ them to oppose using the left-over "cadavers" in
research? Rather than vilifying them for it, congratulate them
on being consistent.
(to others, I'm just following Peter's phrasing -- I do understand
that stem cell lines don't just (or maybe even at all) come from
aborted fetus tissue)

If stem cells do not come from "cadavers" why are people opposing
stem cell research?

If people opposed Reeve's life work because of a misconception then I
don't know what you want to call it, but it does seem "bad" for
those people to gush over Reeve now that he's died.
- Ken

supeman was my favorite -
 

RDean notes:

It seems the discussion has gotten away from
the real question: "Should the Fed fund it?" Banning it is not at
current issue, AFAIK.

correct, you are. The crux of the problem is that, unless funded by the Feds,
most of these research projects will languish for want of substantial, and
relatively quick financial reward. Current academic research has been shaped,
in many cases, by the need for private sector funding, leading to the "orphan
disease" issue noted earlier. For us idealistic types who remember the nature
of scientific research before Reagan started the process of cutting back
Federal Funding, it can be sad having to read certain journal articles, and
wondering if the sponsorship colored the science.
Tom

supeman was my favorite -
 

RDean notes:

It seems the discussion has gotten away from
the real question: "Should the Fed fund it?" Banning it is not at
current issue, AFAIK.

correct, you are. The crux of the problem is that, unless funded by the Feds,
most of these research projects will languish for want of substantial, and
relatively quick financial reward. Current academic research has been shaped,
in many cases, by the need for private sector funding, leading to the "orphan
disease" issue noted earlier. For us idealistic types who remember the nature
of scientific research before Reagan started the process of cutting back
Federal Funding, it can be sad having to read certain journal articles, and
wondering if the sponsorship colored the science.
Tom

supeman was my favorite -
 

RDean notes:

It seems the discussion has gotten away from
the real question: "Should the Fed fund it?" Banning it is not at
current issue, AFAIK.

correct, you are. The crux of the problem is that, unless funded by the Feds,
most of these research projects will languish for want of substantial, and
relatively quick financial reward. Current academic research has been shaped,
in many cases, by the need for private sector funding, leading to the "orphan
disease" issue noted earlier. For us idealistic types who remember the nature
of scientific research before Reagan started the process of cutting back
Federal Funding, it can be sad having to read certain journal articles, and
wondering if the sponsorship colored the science.
Tom

supeman was my favorite -
 

On Wed, 13 Oct 2004 10:27:45 -0400, Frank Reid
wrote:

Your daughter has EDS? I once had a student in a summer program who had type
4...I was the resident medic. snipped

I've always wondered what happened to her....knowing her and working with
her really enlightened my life. I don't think she is still with us, which is
sad.

--riverman

Yes, type 4, the same as my daughter. It killed her mother. Type IV is
the deadliest form. Most don't live past their twenties. Its also very
rare in females as it is male dominant (only 1 in 10 are female).


Sorry, Frank. It's hell enough having kids with ordinary problems or
problems that can at least be watched and pretty much taken care of by
present day doctors.

Cyli
r.bc: vixen. Minnow goddess. Speaker to squirrels.
Often taunted by trout.

http://www.visi.com/~cyli

supeman was my favorite -
 

On Wed, 13 Oct 2004 10:27:45 -0400, Frank Reid
wrote:

Your daughter has EDS? I once had a student in a summer program who had type
4...I was the resident medic. snipped

I've always wondered what happened to her....knowing her and working with
her really enlightened my life. I don't think she is still with us, which is
sad.

--riverman

Yes, type 4, the same as my daughter. It killed her mother. Type IV is
the deadliest form. Most don't live past their twenties. Its also very
rare in females as it is male dominant (only 1 in 10 are female).


Sorry, Frank. It's hell enough having kids with ordinary problems or
problems that can at least be watched and pretty much taken care of by
present day doctors.

Cyli
r.bc: vixen. Minnow goddess. Speaker to squirrels.
Often taunted by trout.

http://www.visi.com/~cyli

supeman was my favorite -
 

On Wed, 13 Oct 2004 10:27:45 -0400, Frank Reid
wrote:

Your daughter has EDS? I once had a student in a summer program who had type
4...I was the resident medic. snipped

I've always wondered what happened to her....knowing her and working with
her really enlightened my life. I don't think she is still with us, which is
sad.

--riverman

Yes, type 4, the same as my daughter. It killed her mother. Type IV is
the deadliest form. Most don't live past their twenties. Its also very
rare in females as it is male dominant (only 1 in 10 are female).


Sorry, Frank. It's hell enough having kids with ordinary problems or
problems that can at least be watched and pretty much taken care of by
present day doctors.

Cyli
r.bc: vixen. Minnow goddess. Speaker to squirrels.
Often taunted by trout.

http://www.visi.com/~cyli