EXPERIMENTAL ?

July 22, 2002

Hi all,

You MUST remember that about 1985 - preliminary results from an operation on the

brain of a Parkinson's patient told people that there was a cure for PD then

through fetal tissue transplant. When a full fledged test was done, it showed

that the patients only benefitted for a few years at best.

This research is pushing adult stem cells at a time when politicians are LOOKING

for a reason to kill embryonic stem cell research. The company which is

sponsoring this research has a VERY big committment to adult stem cell research.

By their own admission this has worked on ONLY one patient and the results are

not well studied at this time. This is not a medicine this is cloning your own

brain cells harvested from YOUR brain and then re-injecting them into your

brain. This is HIGHLY experimental AND was not done on animals first as the

embryonic stem cell research was done.

While it may be perfectly safe in the long run, it IS somewhat dangerous as it

has NOT been done on a MSA patient yet and has only worked once on a PD patient.

They specifically mention working with only neurons and one other cell - but NOT

the glial cells associated with MSA.

This is only an experiment AND depends on cloning adult cells - when politicians

learn that IF someone can clone adult brain cells from your own cells, they may

also be able to clone a whole new you - this TOO will come under fire as

cloning.

It is best to wait for the whole story. I feel that the best research will be

the slow and steady step by step scientific medical research, not from glory of

the moment research.

Note too that research on growth factor hormones is being done in the UK which

may also lead to help for MSA. ALL of this work can be of help.

Take care, Bill Werre

July 23, 2002

Hytrin (FDA approved for other functions) effect on MSA is being

studied. Naturally ya don't know if u have the real drug or placebo. Not

a cure by any means. ya won't be driving again, but heck if it works on

one of the functions I am sure people will be happy.

nancy m.

b.werre@... wrote:

>

> Hi all,

>

> You MUST remember that about 1985 - preliminary results from an operation on

the brain of a Parkinson's patient told people that there was a cure for PD then

through fetal tissue transplant. When a full fledged test was done, it showed

that the patients only benefitted for a few years at best.

>

> This research is pushing adult stem cells at a time when politicians are

LOOKING for a reason to kill embryonic stem cell research. The company which is

sponsoring this research has a VERY big committment to adult stem cell research.

By their own admission this has worked on ONLY one patient and the results are

not well studied at this time. This is not a medicine this is cloning your own

brain cells harvested from YOUR brain and then re-injecting them into your

brain. This is HIGHLY experimental AND was not done on animals first as the

embryonic stem cell research was done.

>

> While it may be perfectly safe in the long run, it IS somewhat dangerous as it

has NOT been done on a MSA patient yet and has only worked once on a PD patient.

They specifically mention working with only neurons and one other cell - but NOT

the glial cells associated with MSA.

>

> This is only an experiment AND depends on cloning adult cells - when

politicians learn that IF someone can clone adult brain cells from your own

cells, they may also be able to clone a whole new you - this TOO will come under

fire as cloning.

>

> It is best to wait for the whole story. I feel that the best research will be

the slow and steady step by step scientific medical research, not from glory of

the moment research.

>

> Note too that research on growth factor hormones is being done in the UK which

may also lead to help for MSA. ALL of this work can be of help.

>

> Take care, Bill Werre

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

July 23, 2002

Dear Deborah:

We will all be praying for you in Los Angeles. Many of us who live in

this area have heard only good things about the work that Dr. Levesque is

doing. There is no question that you are very courageous to offer yourself

for this, but it is only through people such as you that breakthroughs will

come. I also know how discouraged you have been, and yet you are willing to

try one more thing. if it gives you even a little more time, it will be worth

the effort. I live about forty miles from Los Angeles; let me know if there

is anything I can do to help you while you are here.

Love, Barbara

July 23, 2002

Bill,

What was your point in this letter? To shred away hope from those of us

that are still living? To give me one more thing to grieve about on this

long trip to Los Angeles that I take today? To have others simply sit

around, treat the symptoms and die obediently? What good can come from your

words? They truly hurt me and . Was that your point? To have those

of us so sick to humbly lay down and accept that we don't have a fighting

chance in heaven or hell? Sorry, that doesn't work in this camp!

I have not written to this list in several weeks because I have become so

ill that I can no longer sit without aid, cannot breath without aid, cannot

type without sever pain, etc. You know, I'm in late stage MSA and am dying.

Both my husband and I know that there is no CURE at this point in time but

to tell people to simply let their doctors treat their symptoms is

fatalistic.... where in your vocabulary is the word HOPE?

Because of my spiritual beliefs, I would never allow fetal stem cells from

aborted or cloned fetus' to be put in my body knowing that any day now I

will have to meet my maker and account for my actions. This type of

research is unacceptable for me. You have your facts somewhat mixed in the

results that you site in your letter. The study several years ago about

fetal stem cell trials and it being a cure.... well... it didn't work, in

some it caused brain cancer. The other study about adult stem cells was a

failure too but it harvested them from the adrenal gland. This study takes

ones' own brain tissue and uses ONLY it.

As far as this doctor and his company, of course he has a vested interest in

making it work. He WANTS to help people and his agenda is NOT political...

it is humane! He knows that all is not known about the results and what

might show up. Isn't that what " Experimental Trials " are all about? Be it

drug or surgery... and one point in time, they were all experimental and

only left that category because of brave individuals who would not succumb

to the loss of hope. Some of these people won the battle while many many

more lost it but all was done for the good of more than the one. Is it your

belief that all Experimental drug trials and surgeries should stop because

" there is no cure? "

Bill, this procedure does not CLONE anything. No egg is used, no fetal

tissue is used, no Beam me up y sci-fi stuff here. This good doctor

has found a " soup " as he calls it that propagates only the cells that are

removed from your own brain. No baby will ever come of this... it is like

growing cancer in a petri dish... the cancer will turn into a baby no sooner

than this procedure that Dr. Lévesque is trying will. This is hardly

something that will come under political debate.

Yes, one should be wary when only 1 person has ever had the procedure

done. That does make it Experimental. Duhhh.... don't need to be a rocket

scientist to figure that one out. I AM DYING! and quickly. My husband

loves me every bit as much as you loved Charlotte and he knows that a chance

is better than no chance at all. I personally think that I am too far

progressed to even be accepted into the study but I will leave that up to

the doctor and his infinite wisdom and also will leave it up to God who I

have placed my life and death in his hands and asked only that I be able to

do his will. It is my faith that gets me through each day and the horrible

suffering that goes with this disease.

Today, I leave for Los Angeles. Angel Flights is taking me there. I will

be up and out of bed with no proper rest for over 15 hours. This I'm sure

will take it's toll on me. Tomorrow, I will face yet another new doctor who

will either tell me to go home and die or that he can't promise me anything

but will take it before the board of directors at Cedar-Sinai hospital and

plea for a chance for me to be a part of this experiment. If that happens

and by the grace of God I should get better, I will ask you for a personal

apology for trying to take my hope away when I needed it so much. If he

turns me down, then I will come home and treat my incurable disease by

working with the doctors in caring for the ever increasing list of symptoms

as you suggest to everyone and by Christmas, I know that this life of mine

will be lost to this world.

Remember Bill that a CURE will only come from those strong enough to put

their lives on the line and submit to procedures that might help others in

the future. One sacrificed for the benefit of many... I believe that that

has been an acceptable cost for centuries.

Now that I am exhausted and in tears, I will close. I have to tell my

husband what to pack for me and start this long day, actually 3 days of

mine. I noticed Bill that you didn't even sign the petition to try to get

the doctors to help me, the one that Pam Bower so graciouosly posted last

week. I guess I should have figured as much since hope obvously is not

something that you want any of us to believe in.

Know that I forgive you and wish you peace. I have not the energy to

fight with anyone, including you... so please, after you read this letter

just think about what you post before you post it. Sometimes you words hurt

those like me who are already suffering as much as they can bare.

With kindest regards,

Deborah aka Tenacity

___________________________________________________________________

Hi all,

You MUST remember that about 1985 - preliminary results from an operation on

the brain of a Parkinson's patient told people that there was a cure for PD

then through fetal tissue transplant. When a full fledged test was done, it

showed that the patients only benefited for a few years at best.

This research is pushing adult stem cells at a time when politicians are

LOOKING for a reason to kill embryonic stem cell research. The company

which is sponsoring this research has a VERY big commitment to adult stem

cell research. By their own admission this has worked on ONLY one patient

and the results are not well studied at this time. This is not a medicine

this is cloning your own brain cells harvested from YOUR brain and then

re-injecting them into your brain. This is HIGHLY experimental AND was not

done on animals first as the embryonic stem cell research was done.

While it may be perfectly safe in the long run, it IS somewhat dangerous as

it has NOT been done on a MSA patient yet and has only worked once on a PD

patient. They specifically mention working with only neurons and one other

cell - but NOT the glial cells associated with MSA.

This is only an experiment AND depends on cloning adult cells - when

politicians learn that IF someone can clone adult brain cells from your own

cells, they may also be able to clone a whole new you - this TOO will come

under fire as cloning.

It is best to wait for the whole story. I feel that the best research will

be the slow and steady step by step scientific medical research, not from

glory of the moment research.

Note too that research on growth factor hormones is being done in the UK

which may also lead to help for MSA. ALL of this work can be of help.

Take care, Bill Werre

If you do not wish to belong to shydrager, you may

unsubscribe by sending a blank email to

shydrager-unsubscribe

July 23, 2002

Dear Deborah, I wish you the very best on your trip to California. You and

will be in my thoughts this week. I want to point out that Bill

Werre signed the petition just before me, I think number 127 or there

abouts. And he and I and Belinda discussed in the chat room that day about

posting it to the list and we all agreed it was a good idea and hoped it

would help you. I know Bill only wishes you the very best and it was his

hope while Charlotte was living that stem cell research of some sort might

help her oneday. Please don't leave on your trip feeling so angry, we all

love you and want you to be well.

Hugs,

Pam

July 23, 2002

Deborah, I did not sign the petition either and I am very sorry> I guess I

missed it. My father who has MSA was in his last week of the long horrible

journey that MSA takes you on. As of this morning he has now gone to be

with GOD. I think at this moment that you are the most

courageous person I have learned about in this support