Re: NRS grants seem above board

[Guest guest]

Rick,

I agree with your perspective. The NRS advisory board seems to have one

problem and it is not Galderma, it is lack of funds. The research projects

that have received grants all seem to be reasonable efforts to me, I only

hope that they can find additional funding. My wife is an academic and she

assures me (and I'm sure any of you with similar experience will readily

agree) $20-25K does not go very far in a research setting.

The effort to build our own program, the difficulty of building consensus

out of this very diverse group, the challenge of raising adequate funds to

meaningfully fund research all seem daunting to me. I think this support

group is serving its purpose, and doing it wonderfully. I have been

repeatedly touched by the sentiments of compassion offered and impressed by

the diligence and insight shown by many. I will choose to focus on this and

be patient with the research.

If a research-funding program grew out of this group that could be a great

thing. However, in the short term it seems as though one shouldn't paint

the NRS research grants with the Galderma brush. Many of us are frustrated

with the progress in research, many are also at their wit's end with NRS re

sourcing of information, I respect and share these feelings. Nonetheless,

can a fledgling program created by us do much better with the research

effort considering the cost of dividing the resource stream?

----------

>

>To: rosacea-supportegroups

>Subject: The NRS is a great source of information ...

>Date: Thu, Sep 7, 2000, 7:43 PM

>

> Do I know how to get your attention, or what?

> the original subject concerned whether we as a group should

> attempt to fund research in rosacea. I stand by my original point

> that this role can be played effectively by the NRS.

> I'm also relieved to know that they

> have a top-notch medical advisory board making decisions on funding

> research.

>

> What is sad is that these 3 grants

> represented a grand total of approx $71K. I assume most of this

> money came from tax-deductable contributions to the NRS, but does

> anyone object if the money came from Galderma? These seem like very

> relevant research directions to me, and it is naive to suggest that

> they have been carefully selected to protect Galderma's

> business. That's why foundations have independent advisory boards.

>

> To end on an even more controversial point, if you personally want to

> make a dent in advancing current research in rosacea, contributing

> the NRS research grants program is an excellent way to do so.

>

[Guest guest]

Rick,

I agree with your perspective. The NRS advisory board seems to have one

problem and it is not Galderma, it is lack of funds. The research projects

that have received grants all seem to be reasonable efforts to me, I only

hope that they can find additional funding. My wife is an academic and she

assures me (and I'm sure any of you with similar experience will readily

agree) $20-25K does not go very far in a research setting.

The effort to build our own program, the difficulty of building consensus

out of this very diverse group, the challenge of raising adequate funds to

meaningfully fund research all seem daunting to me. I think this support

group is serving its purpose, and doing it wonderfully. I have been

repeatedly touched by the sentiments of compassion offered and impressed by

the diligence and insight shown by many. I will choose to focus on this and

be patient with the research.

If a research-funding program grew out of this group that could be a great

thing. However, in the short term it seems as though one shouldn't paint

the NRS research grants with the Galderma brush. Many of us are frustrated

with the progress in research, many are also at their wit's end with NRS re

sourcing of information, I respect and share these feelings. Nonetheless,

can a fledgling program created by us do much better with the research

effort considering the cost of dividing the resource stream?

----------

>

>To: rosacea-supportegroups

>Subject: The NRS is a great source of information ...

>Date: Thu, Sep 7, 2000, 7:43 PM

>

> Do I know how to get your attention, or what?

> the original subject concerned whether we as a group should

> attempt to fund research in rosacea. I stand by my original point

> that this role can be played effectively by the NRS.

> I'm also relieved to know that they

> have a top-notch medical advisory board making decisions on funding

> research.

>

> What is sad is that these 3 grants

> represented a grand total of approx $71K. I assume most of this

> money came from tax-deductable contributions to the NRS, but does

> anyone object if the money came from Galderma? These seem like very

> relevant research directions to me, and it is naive to suggest that

> they have been carefully selected to protect Galderma's

> business. That's why foundations have independent advisory boards.

>

> To end on an even more controversial point, if you personally want to

> make a dent in advancing current research in rosacea, contributing

> the NRS research grants program is an excellent way to do so.

>

[Guest guest]

Rick,

I agree with your perspective. The NRS advisory board seems to have one

problem and it is not Galderma, it is lack of funds. The research projects

that have received grants all seem to be reasonable efforts to me, I only

hope that they can find additional funding. My wife is an academic and she

assures me (and I'm sure any of you with similar experience will readily

agree) $20-25K does not go very far in a research setting.

The effort to build our own program, the difficulty of building consensus

out of this very diverse group, the challenge of raising adequate funds to

meaningfully fund research all seem daunting to me. I think this support

group is serving its purpose, and doing it wonderfully. I have been

repeatedly touched by the sentiments of compassion offered and impressed by

the diligence and insight shown by many. I will choose to focus on this and

be patient with the research.

If a research-funding program grew out of this group that could be a great

thing. However, in the short term it seems as though one shouldn't paint

the NRS research grants with the Galderma brush. Many of us are frustrated

with the progress in research, many are also at their wit's end with NRS re

sourcing of information, I respect and share these feelings. Nonetheless,

can a fledgling program created by us do much better with the research

effort considering the cost of dividing the resource stream?

----------

>

>To: rosacea-supportegroups

>Subject: The NRS is a great source of information ...

>Date: Thu, Sep 7, 2000, 7:43 PM

>

> Do I know how to get your attention, or what?

> the original subject concerned whether we as a group should

> attempt to fund research in rosacea. I stand by my original point

> that this role can be played effectively by the NRS.

> I'm also relieved to know that they

> have a top-notch medical advisory board making decisions on funding

> research.

>

> What is sad is that these 3 grants

> represented a grand total of approx $71K. I assume most of this

> money came from tax-deductable contributions to the NRS, but does

> anyone object if the money came from Galderma? These seem like very

> relevant research directions to me, and it is naive to suggest that

> they have been carefully selected to protect Galderma's

> business. That's why foundations have independent advisory boards.

>

> To end on an even more controversial point, if you personally want to

> make a dent in advancing current research in rosacea, contributing

> the NRS research grants program is an excellent way to do so.

>

[Guest guest]

Would it be possible for one or a few of us to get more involved with the NRS.

Perhaps they have a Board of Directors we could join?? Then we can contribute

to and improve upon an existing organization rather than build or own.

wrote:

Rick,

I agree with your perspective. The NRS advisory board seems to have one

problem and it is not Galderma, it is lack of funds. The research projects

that have received grants all seem to be reasonable efforts to me, I only

hope that they can find additional funding. My wife is an academic and she

assures me (and I'm sure any of you with similar experience will readily

agree) $20-25K does not go very far in a research setting.

The effort to build our own program, the difficulty of building consensus

out of this very diverse group, the challenge of raising adequate funds to

meaningfully fund research all seem daunting to me. I think this support

group is serving its purpose, and doing it wonderfully. I have been

repeatedly touched by the sentiments of compassion offered and impressed by

the diligence and insight shown by many. I will choose to focus on this and

be patient with the research.

If a research-funding program grew out of this group that could be a great

thing. However, in the short term it seems as though one shouldn't paint

the NRS research grants with the Galderma brush. Many of us are frustrated

with the progress in research, many are also at their wit's end with NRS re

sourcing of information, I respect and share these feelings. Nonetheless,

can a fledgling program created by us do much better with the research

effort considering the cost of dividing the resource stream?

----------

>From: " Rick "

>To: rosacea-supportegroups

>Subject: The NRS is a great source of information ...

>Date: Thu, Sep 7, 2000, 7:43 PM

>

> Do I know how to get your attention, or what?

> the original subject concerned whether we as a group should

> attempt to fund research in rosacea. I stand by my original point

> that this role can be played effectively by the NRS.

> I'm also relieved to know that they

> have a top-notch medical advisory board making decisions on funding

> research.

>

> What is sad is that these 3 grants

> represented a grand total of approx $71K. I assume most of this

> money came from tax-deductable contributions to the NRS, but does

> anyone object if the money came from Galderma? These seem like very

> relevant research directions to me, and it is naive to suggest that

> they have been carefully selected to protect Galderma's

> business. That's why foundations have independent advisory boards.

>

> To end on an even more controversial point, if you personally want to

> make a dent in advancing current research in rosacea, contributing

> the NRS research grants program is an excellent way to do so.

>

-----------------------------------------------------------------

Please read the list highlights thoroughly before posting to the whole group.

See http://rosacea.ii.net/toc.html

When replying, please delete all text at the end of your email that isn't

necessary for your message.

To leave the list send an email to rosacea-support-unsubscribeegroups

---------------------------------

[Guest guest]

Would it be possible for one or a few of us to get more involved with the NRS.

Perhaps they have a Board of Directors we could join?? Then we can contribute

to and improve upon an existing organization rather than build or own.

wrote:

Rick,

I agree with your perspective. The NRS advisory board seems to have one

problem and it is not Galderma, it is lack of funds. The research projects

that have received grants all seem to be reasonable efforts to me, I only

hope that they can find additional funding. My wife is an academic and she

assures me (and I'm sure any of you with similar experience will readily

agree) $20-25K does not go very far in a research setting.

The effort to build our own program, the difficulty of building consensus

out of this very diverse group, the challenge of raising adequate funds to

meaningfully fund research all seem daunting to me. I think this support

group is serving its purpose, and doing it wonderfully. I have been

repeatedly touched by the sentiments of compassion offered and impressed by

the diligence and insight shown by many. I will choose to focus on this and

be patient with the research.

If a research-funding program grew out of this group that could be a great

thing. However, in the short term it seems as though one shouldn't paint

the NRS research grants with the Galderma brush. Many of us are frustrated

with the progress in research, many are also at their wit's end with NRS re

sourcing of information, I respect and share these feelings. Nonetheless,

can a fledgling program created by us do much better with the research

effort considering the cost of dividing the resource stream?

----------

>From: " Rick "

>To: rosacea-supportegroups

>Subject: The NRS is a great source of information ...

>Date: Thu, Sep 7, 2000, 7:43 PM

>

> Do I know how to get your attention, or what?

> the original subject concerned whether we as a group should

> attempt to fund research in rosacea. I stand by my original point

> that this role can be played effectively by the NRS.

> I'm also relieved to know that they

> have a top-notch medical advisory board making decisions on funding

> research.

>

> What is sad is that these 3 grants

> represented a grand total of approx $71K. I assume most of this

> money came from tax-deductable contributions to the NRS, but does

> anyone object if the money came from Galderma? These seem like very

> relevant research directions to me, and it is naive to suggest that

> they have been carefully selected to protect Galderma's

> business. That's why foundations have independent advisory boards.

>

> To end on an even more controversial point, if you personally want to

> make a dent in advancing current research in rosacea, contributing

> the NRS research grants program is an excellent way to do so.

>

-----------------------------------------------------------------

Please read the list highlights thoroughly before posting to the whole group.

See http://rosacea.ii.net/toc.html

When replying, please delete all text at the end of your email that isn't

necessary for your message.

To leave the list send an email to rosacea-support-unsubscribeegroups

---------------------------------

[Guest guest]

Would it be possible for one or a few of us to get more involved with the NRS.

Perhaps they have a Board of Directors we could join?? Then we can contribute

to and improve upon an existing organization rather than build or own.

wrote:

Rick,

I agree with your perspective. The NRS advisory board seems to have one

problem and it is not Galderma, it is lack of funds. The research projects

that have received grants all seem to be reasonable efforts to me, I only

hope that they can find additional funding. My wife is an academic and she

assures me (and I'm sure any of you with similar experience will readily

agree) $20-25K does not go very far in a research setting.

The effort to build our own program, the difficulty of building consensus

out of this very diverse group, the challenge of raising adequate funds to

meaningfully fund research all seem daunting to me. I think this support

group is serving its purpose, and doing it wonderfully. I have been

repeatedly touched by the sentiments of compassion offered and impressed by

the diligence and insight shown by many. I will choose to focus on this and

be patient with the research.

If a research-funding program grew out of this group that could be a great

thing. However, in the short term it seems as though one shouldn't paint

the NRS research grants with the Galderma brush. Many of us are frustrated

with the progress in research, many are also at their wit's end with NRS re

sourcing of information, I respect and share these feelings. Nonetheless,

can a fledgling program created by us do much better with the research

effort considering the cost of dividing the resource stream?

----------

>From: " Rick "

>To: rosacea-supportegroups

>Subject: The NRS is a great source of information ...

>Date: Thu, Sep 7, 2000, 7:43 PM

>

> Do I know how to get your attention, or what?

> the original subject concerned whether we as a group should

> attempt to fund research in rosacea. I stand by my original point

> that this role can be played effectively by the NRS.

> I'm also relieved to know that they

> have a top-notch medical advisory board making decisions on funding

> research.

>

> What is sad is that these 3 grants

> represented a grand total of approx $71K. I assume most of this

> money came from tax-deductable contributions to the NRS, but does

> anyone object if the money came from Galderma? These seem like very

> relevant research directions to me, and it is naive to suggest that

> they have been carefully selected to protect Galderma's

> business. That's why foundations have independent advisory boards.

>

> To end on an even more controversial point, if you personally want to

> make a dent in advancing current research in rosacea, contributing

> the NRS research grants program is an excellent way to do so.

>

-----------------------------------------------------------------

Please read the list highlights thoroughly before posting to the whole group.

See http://rosacea.ii.net/toc.html

When replying, please delete all text at the end of your email that isn't

necessary for your message.

To leave the list send an email to rosacea-support-unsubscribeegroups

---------------------------------

[Guest guest]

That's the spirit. This seems to be a large, energetic group - it seems to

me we could manage to get an advisory spot at least, or establish a liaison.

The only difficulty with this is that we are a very diverse group. Can one

person or a small number of people represent us all? It might be worth

trying to find such a person amongst us. Any good ideas on tackling this?

----------

>

>To: ,

cea List <rosacea-supportegroups>

>Subject: Re: NRS grants seem above board

>Date: Fri, Sep 8, 2000, 9:12 AM

>

>

> Would it be possible for one or a few of us to get more involved with the

> NRS. Perhaps they have a Board of Directors we could join?? Then we can

> contribute to and improve upon an existing organization rather than build

> or own.

>

> wrote:

>

> Rick,

>

> I agree with your perspective. The NRS advisory board seems to have one

> problem and it is not Galderma, it is lack of funds. The research projects

> that have received grants all seem to be reasonable efforts to me, I only

> hope that they can find additional funding. My wife is an academic and she

> assures me (and I'm sure any of you with similar experience will readily

> agree) $20-25K does not go very far in a research setting.

>

> The effort to build our own program, the difficulty of building consensus

> out of this very diverse group, the challenge of raising adequate funds to

> meaningfully fund research all seem daunting to me. I think this support

> group is serving its purpose, and doing it wonderfully. I have been

> repeatedly touched by the sentiments of compassion offered and impressed by

> the diligence and insight shown by many. I will choose to focus on this and

> be patient with the research.

>

> If a research-funding program grew out of this group that could be a great

> thing. However, in the short term it seems as though one shouldn't paint

> the NRS research grants with the Galderma brush. Many of us are frustrated

> with the progress in research, many are also at their wit's end with NRS re

> sourcing of information, I respect and share these feelings. Nonetheless,

> can a fledgling program created by us do much better with the research

> effort considering the cost of dividing the resource stream?

>

> ----------

>>From: " Rick "

>>To: rosacea-supportegroups

>>Subject: The NRS is a great source of information ...

>>Date: Thu, Sep 7, 2000, 7:43 PM

>>

>

>> Do I know how to get your attention, or what?

>

>> the original subject concerned whether we as a group should

>> attempt to fund research in rosacea. I stand by my original point

>> that this role can be played effectively by the NRS.

>

>> I'm also relieved to know that they

>> have a top-notch medical advisory board making decisions on funding

>> research.

>>

>> What is sad is that these 3 grants

>> represented a grand total of approx $71K. I assume most of this

>> money came from tax-deductable contributions to the NRS, but does

>> anyone object if the money came from Galderma? These seem like very

>> relevant research directions to me, and it is naive to suggest that

>> they have been carefully selected to protect Galderma's

>> business. That's why foundations have independent advisory boards.

>>

>> To end on an even more controversial point, if you personally want to

>> make a dent in advancing current research in rosacea, contributing

>> the NRS research grants program is an excellent way to do so.

>>

>

> -----------------------------------------------------------------

> Please read the list highlights thoroughly before posting to the whole

> group. See http://rosacea.ii.net/toc.html

>

> When replying, please delete all text at the end of your email that isn't

> necessary for your message.

>

> To leave the list send an email to rosacea-support-unsubscribeegroups

>

>

>

> ---------------------------------

>

[Guest guest]

That's the spirit. This seems to be a large, energetic group - it seems to

me we could manage to get an advisory spot at least, or establish a liaison.

The only difficulty with this is that we are a very diverse group. Can one

person or a small number of people represent us all? It might be worth

trying to find such a person amongst us. Any good ideas on tackling this?

----------

>

>To: ,

cea List <rosacea-supportegroups>

>Subject: Re: NRS grants seem above board

>Date: Fri, Sep 8, 2000, 9:12 AM

>

>

> Would it be possible for one or a few of us to get more involved with the

> NRS. Perhaps they have a Board of Directors we could join?? Then we can

> contribute to and improve upon an existing organization rather than build

> or own.

>

> wrote:

>

> Rick,

>

> I agree with your perspective. The NRS advisory board seems to have one

> problem and it is not Galderma, it is lack of funds. The research projects

> that have received grants all seem to be reasonable efforts to me, I only

> hope that they can find additional funding. My wife is an academic and she

> assures me (and I'm sure any of you with similar experience will readily

> agree) $20-25K does not go very far in a research setting.

>

> The effort to build our own program, the difficulty of building consensus

> out of this very diverse group, the challenge of raising adequate funds to

> meaningfully fund research all seem daunting to me. I think this support

> group is serving its purpose, and doing it wonderfully. I have been

> repeatedly touched by the sentiments of compassion offered and impressed by

> the diligence and insight shown by many. I will choose to focus on this and

> be patient with the research.

>

> If a research-funding program grew out of this group that could be a great

> thing. However, in the short term it seems as though one shouldn't paint

> the NRS research grants with the Galderma brush. Many of us are frustrated

> with the progress in research, many are also at their wit's end with NRS re

> sourcing of information, I respect and share these feelings. Nonetheless,

> can a fledgling program created by us do much better with the research

> effort considering the cost of dividing the resource stream?

>

> ----------

>>From: " Rick "

>>To: rosacea-supportegroups

>>Subject: The NRS is a great source of information ...

>>Date: Thu, Sep 7, 2000, 7:43 PM

>>

>

>> Do I know how to get your attention, or what?

>

>> the original subject concerned whether we as a group should

>> attempt to fund research in rosacea. I stand by my original point

>> that this role can be played effectively by the NRS.

>

>> I'm also relieved to know that they

>> have a top-notch medical advisory board making decisions on funding

>> research.

>>

>> What is sad is that these 3 grants

>> represented a grand total of approx $71K. I assume most of this

>> money came from tax-deductable contributions to the NRS, but does

>> anyone object if the money came from Galderma? These seem like very

>> relevant research directions to me, and it is naive to suggest that

>> they have been carefully selected to protect Galderma's

>> business. That's why foundations have independent advisory boards.

>>

>> To end on an even more controversial point, if you personally want to

>> make a dent in advancing current research in rosacea, contributing

>> the NRS research grants program is an excellent way to do so.

>>

>

> -----------------------------------------------------------------

> Please read the list highlights thoroughly before posting to the whole

> group. See http://rosacea.ii.net/toc.html

>

> When replying, please delete all text at the end of your email that isn't

> necessary for your message.

>

> To leave the list send an email to rosacea-support-unsubscribeegroups

>

>

>

> ---------------------------------

>