Information from Dawn that will interest you good and wonderful people.
“I have created this site for people who are interested in helping with a memorial benefit in Joe's honor to raise funds for PSC research. PSC Partners has already agreed to partner with friends of Joe to make this dream a reality”.
Joe's father said:
I want the people who hear or read this to understand that the cancer that killed Joe didn't just pop up out of the blue, but is actually the culmination of a single disease process that started in his early teen years. A small percentage of the general population gets IBD (inflammatory bowel disease, either Crohn's Disease or Ulcerative Colitis), a small percentage of IBD victims get PSC (primary sclerosing cholangitis), and a relatively large percentage of PSC victims get a specific type of liver cancer. The PSC and liver cancer (cholangiocarcinoma) are relatively rare, and there is not much research money going in their direction...
"This should change"
"The fact is that Joe surrounded himself with amazing, talented, and generous people. Collectively we have the power to help this cause. Please join the community if you are interested. The purpose of this community will be to discuss and plan the memorial benefit.”
-Dawn
http://community.livejournal.com/hotbread/
Sweet People … this is a tremendous opportunity for us to really do something awesome to honor our dear friend, and to hopefully save other cherished “Joes” from the same struggles with PSC (and the PSC/Cholangiocarcinoma Cancer Combo). I can think of no better way to honor his memory and spirit, and I can certainly think of no better group of people with which to do so … If you join the community, you can read the communications between Dawn and the PSC Partners org.
Hooray!
@(-_-)@
-Devonie
2 comments:
Joe's Mom Chris joined the existing PSC organization nearly a year ago, and we made a donation. I believe this is the main link:
http://www.pscpartners.org/
There is also a Yahoo group concerning PSC. Chris was able to correspond with hundreds of PSC victims and their families from all over the world. This was both good and bad -- Chris understood Joe's special risk of liver cancer, and I guess knowledge of this nature is potentially helpful but also terrifying.
The support of Joe's friends continues to inspire us. Thank you.
Bob Warmbrodt
Joe's Dad
Joe is an inspiration to us all, so the thanks ought to be from us to you and Joe's mom for giving us such a great friend whose life deserves nothing less than never-ending celebration.
Thank you.
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