Re: Re: More about the Foundation

[Guest guest]

Thanks Dave. It looks good on paper but we need to be suspect here on

the internet as who knows what is legit. Even if this Dr.and his

hospital are of a good reputation , I would wonder if it was a center

that had a big enough draw for PSC patients. I think it might actually

be better to set up a foundation through a center already drawing

patients from other parts of the country like Mayo or maybe Mt. Sinai.

Wouldn't a foundation that could benefit any center doing current

research be better? I would work hard to raise money but I would want

to know it was going into the right hands. I wouldn't want it all in

one basket.

Lee

>

> http://webster.utmem.edu/cfrc/scidir.htm

>

> http://www.utmedicalgroup.com/pages/docprofile/doc_Black.html

>

> Best regards,

>

> Dave

>

>

[Guest guest]

I agree totally. I think I just found my job for the fall.

Lee

>

>> It looks good on paper but we need to be suspect here on

>> the internet as who knows what is legit.

>

> Lee; I fully agree that we need to proceed with caution here. I would

> personally like to see some evidence that the initial $200,000

> investment in the Foundation has produced some tangibles.

>

> Best regards,

>

> Dave R.

>

[Guest guest]

Re: Re: More about the Foundation

> Thanks Dave. It looks good on paper but we need to be suspect here on

> the internet as who knows what is legit. Even if this Dr.and his

> hospital are of a good reputation , I would wonder if it was a center

> that had a big enough draw for PSC patients. I think it might actually

> be better to set up a foundation through a center already drawing

> patients from other parts of the country like Mayo or maybe Mt. Sinai.

> Wouldn't a foundation that could benefit any center doing current

> research be better? I would work hard to raise money but I would want

> to know it was going into the right hands. I wouldn't want it all in

> one basket.> Lee

Hi! I have been regularly reading everyone's posts for a while, and I have

found so much useful information, encouragement, and positive vibes from

the group. I haven't been writing much, since I feel that so many members

have much more experience with PSC to offer than I do...However, for a

while,I have been very interested in the possibility of setting up some kind

of a foundation to help those of us with PSC. Once I was diagnosed with PSC

in March 2003 and I got through my first six months of bouts with

cholangitis, four ERCPS with stenting, etc, I was so glad to get on with my

" new normal " life. ( Ever since my son was diagnosed with ulcerative colitis

ten years ago, my husband and I have been very active in CCFA both locally

and nationally, and this connection has been a huge help to us. Also, in

the past ten years, CCFA has sponsored an enormous amount of successful

research projects.) So...we decided last spring that we would love to try to

start some sort of a small but similar nonprofit foundation locally (in

Denver, Colorado) to benefit PSC patients and their families. We realize

from our work with CCFA how difficult it is to raise funds these days, but

we thought we'd give it a try.

I'll try to summarize our progess without boring everyone... We spent

several months looking for an established PSC foundation anywhere in the

U.S., but to no avail. I checked in with our local American Liver

Foundation group, and found that, as Darin has written, most of their

funds are targeted for Hepatitis B and C. We met several times with Dr.

Greg Everson,my hepatologist at the University of Colorado Health Sciences

Center, who offered to be our Medical Advisor. He is a brilliant

diagnostician, and a very knowledgeable and sensitive physician. Together,

we put together plans to try to start a PSC foundation whose goals are

three-pronged: to raise funds to research causes and cures of PSC, to

promote organ donation awareness, and to provide education and support to

PSC patients and their families. My daughter, who is a lawyer, has drafted

the first version of our Articles of Incorporation and all the legal forms,

but these can all be altered.

Anyway, when everyone started writing in this week about searching

for a foundation, I thought that I could throw out the idea of perhaps

having our support group get together and slowly start a foundation amongst

us. I would be glad to work on this, and it sounds like Lee is also

interested. As a first step, would anyone be interested in the possibility

of our putting together a seminar of physicians who work with PSC patients

similar to what Ivor has done in the UK? Would anyone be interested in

working together to try to sponsor a research project? Sorry if I've been

rambling on and on....

Ricky PSC 2003

[Guest guest]

Ricky, thanks for responding. I am away the next week but when I get

back I would like to begin looking into this. Thanks

Lee

On Tuesday, August 31, 2004, at 06:24 PM, Don & Ricky Safer wrote:

>

> Re: Re: More about the Foundation

>

>

>> Thanks Dave. It looks good on paper but we need to be suspect here on

>> the internet as who knows what is legit. Even if this Dr.and his

>> hospital are of a good reputation , I would wonder if it was a center

>> that had a big enough draw for PSC patients. I think it might actually

>> be better to set up a foundation through a center already drawing

>> patients from other parts of the country like Mayo or maybe Mt. Sinai.

>> Wouldn't a foundation that could benefit any center doing current

>> research be better? I would work hard to raise money but I would want

>> to know it was going into the right hands. I wouldn't want it all in

>> one basket.> Lee

>

> Hi! I have been regularly reading everyone's posts for a while, and I

> have

> found so much useful information, encouragement, and positive vibes

> from

> the group. I haven't been writing much, since I feel that so many

> members

> have much more experience with PSC to offer than I do...However, for a

> while,I have been very interested in the possibility of setting up

> some kind

> of a foundation to help those of us with PSC. Once I was diagnosed

> with PSC

> in March 2003 and I got through my first six months of bouts with

> cholangitis, four ERCPS with stenting, etc, I was so glad to get on

> with my

> " new normal " life. ( Ever since my son was diagnosed with ulcerative

> colitis

> ten years ago, my husband and I have been very active in CCFA both

> locally

> and nationally, and this connection has been a huge help to us. Also,

> in

> the past ten years, CCFA has sponsored an enormous amount of successful

> research projects.) So...we decided last spring that we would love to

> try to

> start some sort of a small but similar nonprofit foundation locally (in

> Denver, Colorado) to benefit PSC patients and their families. We

> realize

> from our work with CCFA how difficult it is to raise funds these

> days, but

> we thought we'd give it a try.

> I'll try to summarize our progess without boring everyone... We

> spent

> several months looking for an established PSC foundation anywhere in

> the

> U.S., but to no avail. I checked in with our local American Liver

> Foundation group, and found that, as Darin has written, most of their

> funds are targeted for Hepatitis B and C. We met several times with

> Dr.

> Greg Everson,my hepatologist at the University of Colorado Health

> Sciences

> Center, who offered to be our Medical Advisor. He is a brilliant

> diagnostician, and a very knowledgeable and sensitive physician.

> Together,

> we put together plans to try to start a PSC foundation whose goals are

> three-pronged: to raise funds to research causes and cures of PSC, to

> promote organ donation awareness, and to provide education and support

> to

> PSC patients and their families. My daughter, who is a lawyer, has

> drafted

> the first version of our Articles of Incorporation and all the legal

> forms,

> but these can all be altered.

> Anyway, when everyone started writing in this week about

> searching

> for a foundation, I thought that I could throw out the idea of perhaps

> having our support group get together and slowly start a foundation

> amongst

> us. I would be glad to work on this, and it sounds like Lee is also

> interested. As a first step, would anyone be interested in the

> possibility

> of our putting together a seminar of physicians who work with PSC

> patients

> similar to what Ivor has done in the UK? Would anyone be interested in

> working together to try to sponsor a research project? Sorry if I've

> been

> rambling on and on....

>

> Ricky PSC 2003

>

>