Cholangiocarcinoma advice and Virtual Walking

April 3, 2007

> Sorry to go off again but I obviously have a lot of passion for

how this disease is effecting so many and so many drs just seem to

throw their arms up in the air because they don't know what to do

about it to really help their patients.

>

> Hettinger

- Thank you so much for your interest and your passion. You

have every right to be vehement in your thoughts and feelings about

this disease. And I appreciate that you can continue to invigorate

all of us with the desire to keep fighting for a cure and for on-going

treatments.

I wanted to share with the group my experience yesterday with the

Virtual Walk. Yesterday I received a $100 donation from someone who I

don't know. I had sent out an email to the administrative staff where

I work. A woman from the Home Health Department, whom I have never

met, sent a check for $100. Her note was that this was a worthy and

important cause. Wow, wow and amazing - made me cry!

I also received another $100 from someone I had called who I haven't

seen for a year. She and I worked together for years, so she knew

as he grew from age 5 to 15. She is now home on disability. I

told her I knew her finances were tight, but didn't know if she wanted

the opportunity to give towards PSC. Her check for $100 came in the

mail yesterday too. Again I cried at her generosity, especially

knowing how meaningful that $100 is to her and her husband.

It is hard to ask for donations, but my goodness, it can be so

worthwhile. And at least, through the walk, we have helped other

people become more aware of PSC this year.

- thank you for sharing with us! My thoughts are with you as I

can't imagine how much you miss your husband by your side.

Joanne

(, Ca; mom of , 16, UC/PSC 2-06; JRA 1998)

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