Thank you , and congratulations to your son!

[Guest guest]

,

I didn't realize that it's been 4 years since your son was diagnosed with

PSC & UC. And now he's entering medical school, despite these diseases. I

can't tell you how inspiring that is!!! Congratulations to . And thank

you for all the incredible work you have done for this group. I remember

very well when you first wrote an e-mail to the group. The medical

literature that you've brought to this group has truly raised the level of

value of this support group and the information it gives to all of us.

Many people have told me to relax about the PSC and the possibility that I

might one day need a liver transplant. Easy for them to say. I think the

more I learn the calmer I can be about it. I feel that learning not only

what the literature says, but also hearing the experience of what others go

through, I have some idea of what to expect, and then it's not quite so

scary. I would be totally freaked out if I went to the doctor one day and he

said I needed to be listed for a liver transplant. At least now I wouldn't

be so surprised (although reading about it theoretically and hearing from my

doctor are 2 different things) or scared. If I need a liver some day, I'll

see it as a great gift if I get a transplant. I suspect the hardest part of

the ordeal would be the waiting to see if I get a transplant. I've already

had major surgery and survived that just fine, so I don't think I would be

so scared of that.

Next year I hope to go to the conference. I would also like to raise money

for PSC support. I've been reluctant to do so because I've viewed it as

somewhat selfish, since I'm affected by the disease. In the past, I've

raised money for other causes, such as AIDS, heart disease, diabetes, breast

cancer, etc., but that was for other people. It feels odd to me to raise

money for something that benefits me. But I think it's time to buckle down

and do it.

-Marie

>Dave

>(father of (22); PSC 07/03; UC 08/03)

>West Lafayette, IN

>

>

>

_________________________________________________________________

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[Guest guest]

..... Next year I hope to go to the conference. I would also like to

raise money for PSC support. I've been reluctant to do so because I've

viewed it as somewhat selfish, since I'm affected by the disease. In

the past, I've raised money for other causes, such as AIDS, heart

disease, diabetes, breast cancer, etc., but that was for other people.

It feels odd to me to raise money for something that benefits me. But

I think it's time to buckle down and do it.

> -Marie

Marie -

It's wonderful that you are ready (or ready to get ready!) to

participate in raising funds for PSC research. Asking for donations

or asking others to support your fundraising efforts is very difficult

for some people. I know it is hard for me - and I really have to

FORCE myself to do it.

But... I believe in raising funds for PSC research for so many

reasons. Each and every one that has PSC can benefit from new

research. With the " genetic connections " , other family members may

also benefit - who knows! Thus, asking others to participate by

donating directly to PSC Partners or through the fundraising efforts

is in no way selfish.

Plus (then I'll get off my soapbox)... diseases that affect many also

receive huge amounts of money. The orphan diseases receive very

little (or no) grant money and don't have large foundations backing

them. And lastly I would bet that almost no foundations have as low a

percent of administrative costs as does PSC Partners. At the 2007

conference, I believe Deb Wente (treasurer), reported less than 1%

overhead/administrative costs for the foundation. The board members

donate their time, the accounting services, etc are nearly all donated

by individuals who care greatly about finding a cure for PSC.

Amazing, when other large organizations have up to 25% or more

administrative overhead costs.

OOPS (I fudged that I was ready to be quiet!) - another important

aspect as we work to raise funds - We are also raising awareness that

PSC exists, it heavily impacts peoples lives, and very few people have

ever heard of it. So, as we talk with others, we are educating them

also. And (truly my last thought!) - I have found the generosity and

willingness to give is so great in friends, acquaintances and

co-workers - those who know my son and/or know me, want to give to

someone they know and care about.

Thinking about these things gives me the " get up and go " to ask

others! And, next month (after our vacation), I will gather all

change to donate to The Road to ville! Thanks Reggie and Lee

for the idea!

Joanne

(, Ca., mom of , 17, UC/PSC 2-06; JRA 1998)

[Guest guest]

It's Father's Day, and I was watching the Colorado Rockies get blown

out 7-4 by the Tampa Bay Devil Rays. Every time a home run was hit,

$20,000 was donated to Prostate Cancer research.

Here's the official line:

" With support from Major League teams, players, managers and their

coaching staffs, and umpires, each home run hit in 60 selected games,

played from June 6-17, 2007 raises money to fight prostate cancer, the

most commonly diagnosed non-skin cancer in America. "

Has anyone approached the National Football League with an appeal like

this for PSC? It seems like a natural fit to me, especially since

Walter Payton was afflicted with it. His 10 year anniversary is coming

up - he passed away in 1999. A foundation was set up in his name, but

it's to help needy children, not to fund research for PSC.

What do you guys think? If you all think it's worth it, I'll spend the

time researching it. I am thinking it can't hurt to ask. Is this

something PSC Partners should do? Like I said, let me know what you

think...

Happy Father's Day,

Wife of Ian, 38: dx PSC 2002

> Plus (then I'll get off my soapbox)... diseases that affect many also

> receive huge amounts of money. The orphan diseases receive very

> little (or no) grant money and don't have large foundations backing

> them.

[Guest guest]

By the way, as of today, there were 91 qualifying home runs.

$20,000 x 91 = $1,820,000.

Amazing...

[Guest guest]

, I am just off to catch a plane but this is something to look into.Think you could find out who to contact? ThanksLeeIt's Father's Day, and I was watching the Colorado Rockies get blown out 7-4 by the Tampa Bay Devil Rays. Every time a home run was hit, $20,000 was donated to Prostate Cancer research.Here's the official line:"With support from Major League teams, players, managers and their coaching staffs, and umpires, each home run hit in 60 selected games, played from June 6-17, 2007 raises money to fight prostate cancer, the most commonly diagnosed non-skin cancer in America."Has anyone approached the National Football League with an appeal like this for PSC? It seems like a natural fit to me, especially since Walter Payton was afflicted with it. His 10 year anniversary is coming up - he passed away in 1999. A foundation was set up in his name, but it's to help needy children, not to fund research for PSC.What do you guys think? If you all think it's worth it, I'll spend the time researching it. I am thinking it can't hurt to ask. Is this something PSC Partners should do? Like I said, let me know what you think...Happy Father's Day,

[Guest guest]

YES I THINK IT IS A GOOD IDEA true were not as big as some of the other disease..But just to get the word out about PSC may help. Jeanne Roehrich wrote: By the way, as of today, there were 91 qualifying home runs.$20,000 x 91 = $1,820,000. Amazing...