an answer to a very important question to Dr. Buckner

[Guest guest]

Some of you asked me this privately, so I wrote and asked Dr. Buckner to clarify this for us. Here is my letter to her and then her response. Please consider partcipating in her research, pleae e-mail me soon if you want to. Thanks lu

Hi Jane,

I have so much enthusiasm from your letter on

your research. I am making a list of names,address,phone numbers and e-mail addys for you, of the ones who want to participate. This may take a week or two because some folks are sick, and you have to give them a little extra time to respond. Also I have a question that one of the patients e-mailed me privately to ask. Her doctor told her the blood studies wouldn't do any good unless we were flaring. Can you give me an answer for this if anyone else ask the same thing or that I could just write and say to the whole group. Thank you for your time and all that you are doing. We are going to raise funds for you! You can bet on that! Luanne

>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

That is a very good question.  The studies that I am doing do not require the patient to be flaring, in fact I am interested in looking at samples from patients with active and quiescent disease.  Additionally, we are looking for genes which may be important in RP and this does not change with disease activity. Don't worry about taking a few weeks.  I am more than happy to help. Jane

[Guest guest]

Some of you asked me this privately, so I wrote and asked Dr. Buckner to clarify this for us. Here is my letter to her and then her response. Please consider partcipating in her research, pleae e-mail me soon if you want to. Thanks lu

Hi Jane,

I have so much enthusiasm from your letter on

your research. I am making a list of names,address,phone numbers and e-mail addys for you, of the ones who want to participate. This may take a week or two because some folks are sick, and you have to give them a little extra time to respond. Also I have a question that one of the patients e-mailed me privately to ask. Her doctor told her the blood studies wouldn't do any good unless we were flaring. Can you give me an answer for this if anyone else ask the same thing or that I could just write and say to the whole group. Thank you for your time and all that you are doing. We are going to raise funds for you! You can bet on that! Luanne

>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

That is a very good question.  The studies that I am doing do not require the patient to be flaring, in fact I am interested in looking at samples from patients with active and quiescent disease.  Additionally, we are looking for genes which may be important in RP and this does not change with disease activity. Don't worry about taking a few weeks.  I am more than happy to help. Jane

[Guest guest]

In a message dated 9/14/01 5:00:45 PM Pacific Daylight Time, Lu1953@...

writes:

<<

That is a very good question.  The studies that I am doing do not require

the

patient to be flaring, in fact I am interested in looking at samples from

patients with active and quiescent disease.  Additionally, we are looking

for

genes which may be important in RP and this does not change with disease

activity. Don't worry about taking a few weeks.  I am more than happy to

help. Jane

Lu thanks for all that you are doing for the Fondation and the work with Dr

Buckner.

Everyone, Please join in this great project!!! Just a few vials of blood

from all of us could bring about great results... This is sooo important...

Thanks again Lu... What would we do with out you????

Hugs

[Guest guest]

In a message dated 9/14/01 5:00:45 PM Pacific Daylight Time, Lu1953@...

writes:

<<

That is a very good question.  The studies that I am doing do not require

the

patient to be flaring, in fact I am interested in looking at samples from

patients with active and quiescent disease.  Additionally, we are looking

for

genes which may be important in RP and this does not change with disease

activity. Don't worry about taking a few weeks.  I am more than happy to

help. Jane

Lu thanks for all that you are doing for the Fondation and the work with Dr

Buckner.

Everyone, Please join in this great project!!! Just a few vials of blood

from all of us could bring about great results... This is sooo important...

Thanks again Lu... What would we do with out you????

Hugs

[Guest guest]

Hey ,

Your more than welcome. How is ? Do you know anything yet? How is ? I miss you my friend! I love you lots!

Lu

Lu thanks for all that you are doing for the Fondation and the work with Dr Buckner.

Everyone, Please join in this great project!!! Just a few vials of blood from all of us could bring about great results... This is sooo important...

Thanks again Lu... What would we do with out you????

Hugs

[Guest guest]

Hey ,

Your more than welcome. How is ? Do you know anything yet? How is ? I miss you my friend! I love you lots!

Lu

Lu thanks for all that you are doing for the Fondation and the work with Dr Buckner.

Everyone, Please join in this great project!!! Just a few vials of blood from all of us could bring about great results... This is sooo important...

Thanks again Lu... What would we do with out you????

Hugs

[Guest guest]

I want to first apologize to all those on digest for not putting just a snippet of the email I am replying to on here, but I felt it VERY important for everyone to read what Lu and wrote here.

Dr. Buckner is doing research specifically on POLYCHONDRITIS. Our disease. our uncommon, rare disease. This is unheard of. There is no money in this disease, yet this wonderful doctor is STILL doing MAJOR research on RP.

PLEASE, consider donating a few vials of blood to help us all, help Dr. Buckner find a CURE for this disease that has already taken many of my/our friends. Please!

I want to also join in thanking Lu for all she is doing to help us and Dr. Buckner find a cure of RP.

W

>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

<< That is a very good question. The studies that I am doing do not require the patient to be flaring, in fact I am interested in looking at samples from patients with active and quiescent disease. Additionally, we are looking for genes which may be important in RP and this does not change with disease activity. Don't worry about taking a few weeks. I am more than happy to help. JaneLu thanks for all that you are doing for the Fondation and the work with Dr Buckner. Everyone, Please join in this great project!!! Just a few vials of blood from all of us could bring about great results... This is sooo important... Thanks again Lu... What would we do with out you????Hugs

[Guest guest]

I want to first apologize to all those on digest for not putting just a snippet of the email I am replying to on here, but I felt it VERY important for everyone to read what Lu and wrote here.

Dr. Buckner is doing research specifically on POLYCHONDRITIS. Our disease. our uncommon, rare disease. This is unheard of. There is no money in this disease, yet this wonderful doctor is STILL doing MAJOR research on RP.

PLEASE, consider donating a few vials of blood to help us all, help Dr. Buckner find a CURE for this disease that has already taken many of my/our friends. Please!

I want to also join in thanking Lu for all she is doing to help us and Dr. Buckner find a cure of RP.

W

>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

<< That is a very good question. The studies that I am doing do not require the patient to be flaring, in fact I am interested in looking at samples from patients with active and quiescent disease. Additionally, we are looking for genes which may be important in RP and this does not change with disease activity. Don't worry about taking a few weeks. I am more than happy to help. JaneLu thanks for all that you are doing for the Fondation and the work with Dr Buckner. Everyone, Please join in this great project!!! Just a few vials of blood from all of us could bring about great results... This is sooo important... Thanks again Lu... What would we do with out you????Hugs

[Guest guest]

In a message dated 9/14/01 6:45:35 PM Pacific Daylight Time,

susuw@... writes:

<< this wonderful doctor is STILL doing MAJOR research on RP.

PLEASE, consider donating a few vials of blood to help us all, help Dr.

Buckner find a CURE for this disease that has already taken many of my/our

friends. Please!

>>

, I applaud you and can't stress enough how IMPORTANT this is...Thank

you for bringing it up again... Please people.... send your names to LU....

The more we have involved the more Dr. Buckner will have to work with... Just

think... She has 200 of us RPer's in one place.... What more could she ask

for....... except our co operation. It is all free... Lets get a big

response to Lu to give to Dr. B. I know we can do it... We are a strong

bunch...in prayer, in support, in caring and much more...

Also, while you are sending your blood, why not send a few $ to the

foundation... This money will hopefully one day go to dr B for her

research... at least some of it... If you haven't yet made a contribution,

please do now...

Also... ORDER those MEDIC ALERT Bracelets!!!!! Gosh.... I'm getting hoarse!

Please stop making me nag... LOL

Thanks again for addressing this issue . Love ya girl and miss you

terribly.

hugs

[Guest guest]

In a message dated 9/14/01 6:45:35 PM Pacific Daylight Time,

susuw@... writes:

<< this wonderful doctor is STILL doing MAJOR research on RP.

PLEASE, consider donating a few vials of blood to help us all, help Dr.

Buckner find a CURE for this disease that has already taken many of my/our

friends. Please!

>>

, I applaud you and can't stress enough how IMPORTANT this is...Thank

you for bringing it up again... Please people.... send your names to LU....

The more we have involved the more Dr. Buckner will have to work with... Just

think... She has 200 of us RPer's in one place.... What more could she ask

for....... except our co operation. It is all free... Lets get a big

response to Lu to give to Dr. B. I know we can do it... We are a strong

bunch...in prayer, in support, in caring and much more...

Also, while you are sending your blood, why not send a few $ to the

foundation... This money will hopefully one day go to dr B for her

research... at least some of it... If you haven't yet made a contribution,

please do now...

Also... ORDER those MEDIC ALERT Bracelets!!!!! Gosh.... I'm getting hoarse!

Please stop making me nag... LOL

Thanks again for addressing this issue . Love ya girl and miss you

terribly.

hugs