Re: Food for thought?

[Guest guest]

Lavon,

Thank you for your letter. I have been sitting here on my fractured sacrum,

trying to decide if I am, or will be, well enough to travel. I agree with

your sentiments, and will do all I can to get there. After all, they have

already invested 2 years in me.

Jo Ann

[Guest guest]

Lavon,

Thank you for your letter. I have been sitting here on my fractured sacrum,

trying to decide if I am, or will be, well enough to travel. I agree with

your sentiments, and will do all I can to get there. After all, they have

already invested 2 years in me.

Jo Ann

[Guest guest]

Lavon,

Do you know how many people they invited back? I was disappointed, by not

surprised, that I wasn't invited back last year. I did complete an

application last year, and of course, the one this year. Since I go

regularly to UCSF ALS Research Center, I was thinking of asking them (NIH) if

they could have me the do the finger tapping and timing of my gait and

whatever the other thing was (now can't remember), if I could perform these

tasks at UCSF and then they forward the results. Do you think that would

work or would it screw up NIH's study?

[Guest guest]

Lavon,

I couldn't agree more! We need as many people as possible to join in

the NIH study.

I just scheduled my NIH visit for 8/1. NIH pays for our airfare, and

for a portion of our hotel and meal expenses.

I spoke to Dr. Floeter about a year ago about her work. At that point

she had preliminary data suggesting that PLS and ALS were separate

disease entities. This was contrary to an article by a french group

(can't remember their names) who suggested that PLS is a part of ALS.

But Dr. Floeter's data was still very preliminary.

Hopefully, this new round of follow-up appointment will provide more

data on this important issue.

Mark

> Ok folks, not pointing fingers but 's post got me thinking- Two

years

> ago Sue Niquette managed to get a PLS study resurrected at NIH.

This was

> no mean feat and might yet lead to some diagnostic testing /

understanding

> of the natural history/ refinement of diagnostic criteria and who knows

> what else. The study had been cancelled once previously because of

lack of

> subjects. Now they're trying to close it out with a minimum of those

> dreaded words " lost to follow up " . For those of you who have yet to

> respond or have not decided please think about this...

> An important part of research is research subjects. There are only

> 300-500 of us in the whole country so recruitment will always be

> problematic. (I was even considering delaying baclofen pump surgery

until

> the end of this study so I would remain eligible and only went ahead

when

> Dr. Floeter encouraged all of us to go ahead with Dr. recommendations

> without regard to the study). Doctora at NIH compete for a finite

amount

> of funds and folks we aren't a sexy disease that is likely to be

> funded. Face it, a bunch of gimps don't look like they have it so

bad when

> compared to the 100 times more prevalent and so much more riveting

ALS. If

> we do not try to follow through for the long haul then researchers

will be

> less likely to try to study us. Hereditary studies such as those by

> Drs.Siddique and Fink are important but remember this was the only

study

> looking at folks with non hereditary links to the disease. The NIH

study

> didn't look at our genetic potential, it focused four square on us.

> I know folks have legitimate and compelling reasons not to go but please

> if you can try to do this. Lavon

[Guest guest]

Lavon,

I couldn't agree more! We need as many people as possible to join in

the NIH study.

I just scheduled my NIH visit for 8/1. NIH pays for our airfare, and

for a portion of our hotel and meal expenses.

I spoke to Dr. Floeter about a year ago about her work. At that point

she had preliminary data suggesting that PLS and ALS were separate

disease entities. This was contrary to an article by a french group

(can't remember their names) who suggested that PLS is a part of ALS.

But Dr. Floeter's data was still very preliminary.

Hopefully, this new round of follow-up appointment will provide more

data on this important issue.

Mark

> Ok folks, not pointing fingers but 's post got me thinking- Two

years

> ago Sue Niquette managed to get a PLS study resurrected at NIH.

This was

> no mean feat and might yet lead to some diagnostic testing /

understanding

> of the natural history/ refinement of diagnostic criteria and who knows

> what else. The study had been cancelled once previously because of

lack of

> subjects. Now they're trying to close it out with a minimum of those

> dreaded words " lost to follow up " . For those of you who have yet to

> respond or have not decided please think about this...

> An important part of research is research subjects. There are only

> 300-500 of us in the whole country so recruitment will always be

> problematic. (I was even considering delaying baclofen pump surgery

until

> the end of this study so I would remain eligible and only went ahead

when

> Dr. Floeter encouraged all of us to go ahead with Dr. recommendations

> without regard to the study). Doctora at NIH compete for a finite

amount

> of funds and folks we aren't a sexy disease that is likely to be

> funded. Face it, a bunch of gimps don't look like they have it so

bad when

> compared to the 100 times more prevalent and so much more riveting

ALS. If

> we do not try to follow through for the long haul then researchers

will be

> less likely to try to study us. Hereditary studies such as those by

> Drs.Siddique and Fink are important but remember this was the only

study

> looking at folks with non hereditary links to the disease. The NIH

study

> didn't look at our genetic potential, it focused four square on us.

> I know folks have legitimate and compelling reasons not to go but please

> if you can try to do this. Lavon

[Guest guest]

In a message dated 7/16/2002 9:43:46 AM Pacific Daylight Time,

lockwood@... writes:

> Anyway, just wanted anyone

> asked back who thought it wasn't that important to reconsider- Lavon

>

Lavon -- I certainly didn't think for a minute that it wasn't important. Just

thought I'd be totally worn out BUT, I called back but I guess Netta was

gone for the day (this 3 hour time difference really makes it difficult at

times). I left a message that if the 14th were still available, then I'd

come.

I'll try her first thing when I wake up so maybe I'll get her before I leave.

[Guest guest]

Not sure how many, the list of names seemed to be around 10. I recognized

3 names from those who returned last year. Don't know about the stuff

being measured off site. At NIH they can control for a lot of things I can

think of- same computer response, same keyboard, same floor, etc. No idea

of what other than the obvious so I don't know what the researchers think

would or would not interfere. Why not call? Anyway, just wanted anyone

asked back who thought it wasn't that important to reconsider- Lavon

[Guest guest]

, Joanne, anyone else- I don't want to pressure anyone to go if they

feel it would be harmful to their well being! Needing to conserve energy

or protect a sore backside is a good reason not to go- I was trying to

reach folks who might have decided " It's not really important. " and decided

to skip the trip because it's only a half day and won't tell me anything

new. My intent was to stimulate some thought- a lot more folks than the 4

of us who've fessed up to being invited were asked back- Netta said she had

had very few takers and I was concerned that some folks had not considered

this as carefully as they might. Please do what you need to- I'm just glad

I'm lucky enough to have the time and energy to go (although I really don't

look forward to the plane rides!) Lavon