Re: *Carolyn* PSC Clinical Trial at Mayo

[Guest guest]

Carolyn,

Thank you so much for letting

us know about this study! I called

and Gwen is mailing out an invitation to Ken ASAP. I hope everyone in this group joins the

study. All they want is blood

samples from the patient, brothers & sisters and parents (which they pay

for) and answers to a questionnaire. Thanks Carolyn!

Barb

in Texas - son Ken (31) UC 91 PSC 99

PSC Clinical Trial at Mayo

" Unraveling the Genetic Predilection to Primary Sclerosing

Cholangitis (PSC). "

Go to this website for details:

http://clinicaltrials.mayo.edu/clinicaltrialdetails.cfm?trial_id=100124 & title=Unraveling%20the%20Genetic%20Predilection%20to%20Primary%20Sclerosing%20Cholangitis%20(PSC)

[Guest guest]

Barb and Carolyn,

Thanks for spreading this important information. I'll call Mayo right away, and I hope that many others in our group do too.

Ricky

PSC 2003

PSC Clinical Trial at Mayo

"Unraveling the Genetic Predilection to Primary Sclerosing Cholangitis (PSC)."Go to this website for details:http://clinicaltrials.mayo.edu/clinicaltrialdetails.cfm?trial_id=100124 & title=Unraveling%20the%20Genetic%20Predilection%20to%20Primary%20Sclerosing%20Cholangitis%20(PSC)

[Guest guest]

Carolyn,

I believe this is the same trial that my son Todd is participating

in. It was very simple to participate in. There was an extensive

questionaire that I filled out for him and once that was sent back,

Mayo then sent the kit for blood samples. He just took the box with

him when he got his recent bloodwork done...he just required an

additional 6 tubes and the lab took care of the rest. There was no

cost involved. Thanks for posting the details of the study for those

in the group.

Joanne (mom of Todd, 19, psc 12/01, crohns 1/02, tx twice 12/03 and

living life to the fullest in 05)

[Guest guest]

To all of you who have already responded, may I say thank you, thank

you, thank you!!! Not just for responding to Mayo Clinic, but for

responding also to me on here. As I read each one, I sat here with

joyful tears running freely.

You see, my strength and abilities are so terribly limited these days,

that I spend approx. 95% of my time in the bed or in my reclining chair.

I'm in near-constant discomfort and/or pain, swallow pills day and

night, am on oxygen, and am struggling to recover from a bacterial sinus

infection that has gone on for 4 weeks now with no let-up. Over time

I've accepted and come to peace with the reality that I simply can't do

much anymore. So, to be able to make one little phone call and then

write a short e-mail to share that with y'all seemed to be a positive

though hardly earthshaking part of my morning. To my astonishment, this

evening it has evolved into a wonderfully joyous celebration (for me

personally).

This clinical trial asks for so little and there are, relatively

speaking, so few of us who can provide the answers. God willing, this

could be of vital importance for our children, grandchildren, and on

down the line.

Thanks again, everyone!! Y'all are the best!!

Carolyn B. in SC

Crohn's dx 1995 (but had it since 1980);

PSC dx 2001 (though we discovered soon thereafter the " string of beads "

in much ductwork was noted on my hospital charts in '94 when gall

bladder removed; just no one bothered to mention it to us!)

[Guest guest]

Barb Henshaw wrote:

> Carolyn,

>

>

>

> Thank you so much for letting us know about this study! I called and

> Gwen is mailing out an invitation to Ken ASAP. I hope everyone in

> this group joins the study.

>

I called and she commented that she'd suddenly gotten a flood of people

wanting to enroll! It may be that as time goes on researchers will

start to view us and our members as a resource to help them. IMO that

would be great!

Everyone keep calling in! This one is easy to participate in, so

there's no reason not to!

athan

[Guest guest]

athan wrote:

>

> I called and she commented that she'd suddenly gotten a flood of people

> wanting to enroll! It may be that as time goes on researchers will

> start to view us and our members as a resource to help them. IMO that

> would be great!

>

> Everyone keep calling in! This one is easy to participate in, so

> there's no reason not to!

Hi athan --

How heartwarming to know there's been such terrific response!! Let me

toss out here now another idea which we came up with yesterday -- we are

going to print out a copy of the Mayo Clinic page telling about this

trial, and then take it to my GI dr. next week. I'll ask (beg!!) him to

distribute it to any other PSC patients being seen by this practice.

Everyone of us in this group can do the same thing. It takes only a few

moments to print it out and take it to your next dr. appt., but just

think what it could mean for future patients.

Once again, in case anyone missed it the first time, that website is:

http://clinicaltrials.mayo.edu/clinicaltrialdetails.cfm?trial_id=100124 & title=Un\

raveling%20the%20Genetic%20Predilection%20to%20Primary%20Sclerosing%20Cholangiti\

s%20(PSC)

Thanks everyone!!! :-)

Carolyn B. in SC

[Guest guest]

Okay I feel so useless. You have to

18+ to be included. Noah is too young. I would be all over taking

it to his doc. Unfortunately, she is peds only. When we were in

there today, she said that Noah is her only PSC patient. In the last

month, she has had 7 new IBD cases- thankfully none positively screened for

PSC. I think that is a lot of IBD for kids.

From: [mailto: ] On Behalf Of verviers@...

Sent: Thursday, July 14, 2005

10:01 PM

To:

Subject: Re: *Carolyn*

PSC Clinical Trial at Mayo

athan wrote:

>

> I called and she commented that she'd

suddenly gotten a flood of people

> wanting to enroll! It may be that as

time goes on researchers will

> start to view us and our members as a

resource to help them. IMO that

> would be great!

>

> Everyone keep calling in! This one is

easy to participate in, so

> there's no reason not to!

Hi athan --

How heartwarming to know there's been such

terrific response!! Let me

toss out here now another idea which we came up with

yesterday -- we are

going to print out a copy of the Mayo Clinic page

telling about this

trial, and then take it to my GI dr. next

week. I'll ask (beg!!) him to

distribute it to any other PSC patients

being seen by this practice.

Everyone of us in this group can do the same

thing. It takes only a few

moments to print it out and take it to your next

dr. appt., but just

think what it could mean for future patients.

Once again, in case anyone missed it the first

time, that website is:

http://clinicaltrials.mayo.edu/clinicaltrialdetails.cfm?trial_id=100124 & title=Unraveling%20the%20Genetic%20Predilection%20to%20Primary%20Sclerosing%20Cholangitis%20(PSC)

Thanks everyone!!! :-)

Carolyn B. in SC

SPONSORED

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Liver

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[Guest guest]

Dear Carolyn,What a good idea. The information will also be in our next newsletter. Could you also bring a copy of the newsletter to your Doc so that his patients could sign up for it? People can now sign up for email notification of our newsletter by going to our web sitewww.pscpartners.orgLee athan wrote: > > I called and she commented that she'd suddenly gotten a flood of people > wanting to enroll!  It may be that as time goes on researchers will > start to view us and our members as a resource to help them.  IMO that > would be great! > > Everyone keep calling in!  This one is easy to participate in, so > there's no reason not to! Hi athan -- How heartwarming to know there's been such terrific response!!  Let me toss out here now another idea which we came up with yesterday -- we are going to print out a copy of the Mayo Clinic page telling about this trial, and then take it to my GI dr. next week.  I'll ask (beg!!) him to   distribute it to any other PSC patients being seen by this practice. Everyone of us in this group can do the same thing.  It takes only a few moments to print it out and take it to your next dr. appt., but just think what it could mean for future patients. Once again, in case anyone missed it the first time, that website is: http://clinicaltrials.mayo.edu/clinicaltrialdetails.cfm?trial_id=100124 & title=Unraveling%20the%20Genetic%20Predilection%20to%20Primary%20Sclerosing%20Cholangitis%20(PSC) Thanks everyone!!!  :-) Carolyn B. in SC

[Guest guest]

Lee Bria wrote:

> What a good idea. The information will also be in our next newsletter.

> Could you also bring a copy of the newsletter to your Doc so that his

> patients could sign up for it?

> People can now sign up for email notification of our newsletter by going

> to our web site

> www.pscpartners.org

Absolutely, Lee!! I'll be glad to do that.

My GI dr.'s office in the largest GI practice in our metro area; it has

over a dozen doctors. I know that as of a couple of years ago I was the

only female PSC/Crohn's patient ever seen in the practice, but I

honestly don't know if there are any other PSC patients there at all

right now. Just in case, though, I'm going fully prepared to bring them

all into the loop.

Regards,

Carolyn B. in SC