Guest guest Posted July 17, 2007 Report Share Posted July 17, 2007 Joanne, etc., I'm happy to share a copy of my Road to ville letter with you. It's been incredibly successful, it's much easier for me to reach out to a large number of people with a letter. And, no one (practically ) is donating less than a mile! If anyone would prefer it as a Word attachment, just let me know and I'll email it directly to you. Dear Family and Friends of the Wentes and Grovers, As many of you know, in August, 2004, our daughter, Wente, was diagnosed with Primary Sclerosing Cholangitis (PSC), an uncommon and currently incurable liver disease that may require a transplant some time down the road unless a cure is found. Up until recently, has been asymptomatic – after a recent procedure to " unclog " her bile ducts, it is our goal to keep her that way for another few years. In January 2005, a 501©(3) not for profit Foundation dedicated to finding a cure for PSC and providing education and support for PSC patients and caregivers was created. Following is a partial list of our successes since our inception: -We are a totally volunteer foundation with an administrative expense of only 1.5% (Deb is the Treasurer). -Our active website (with information regarding our educational, support, and research activities) has an average of 30,000 hits per month. -Our PSC Literature site has 53,000 abstracts in the database covering all aspects of PSC and related diseases, which is accessed by physicians, researchers, and patients. -We created a brochure entitled " Living With PSC " which is available to PSCers, physicians, and caregivers. So far, 2800 brochures have been handed out nationally. -We hold annual national conferences for PSCers and caregivers. The first three were attended by about 100 participants each. -Our Medical Scientific Advisory Committee is actively engaged in deciding where to allocate our funds for PSC research. In 2006, our board of directors approved financial support for two types of PSC research: -$20,000 donated to STOPSC registry run by The Foundation -$3000 prize donated to the most promising junior PSC researcher to be awarded at the 2007 annual meeting of AASLD (American Association for the Study of Liver Diseases). The 2008 PSC Partners Seeking a Cure Conference will be held May 2- 4, 2008 at the Mayo Clinic in ville Florida. Mile by mile we will walk/run/ride/swim across the country from the Denver Hyatt Tech Center to our next conference in ville, FL. We have 2,000 miles to cover!! Let's get going! Each mile is covered by raising $50. Please consider making a donation in 's name. All donations are tax deductible and go toward researching a cure for this specific disease and providing support and information to those who have it. Thank you, Deb, , and A tax-deductible donation of $50/mile in honor of Wente can be sent to: PSC Partners Seeking a Cure The Road to ville 5237 So. Kenton Way Englewood, CO 80111 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2007 Report Share Posted July 17, 2007 Great letter. Please do send it also as an enclosure. Marie Joanne, etc., I'm happy to share a copy of my Road to ville letter with you. It's been incredibly successful, it's much easier for me to reach out to a large number of people with a letter. And, no one (practically ) is donating less than a mile! If anyone would prefer it as a Word attachment, just let me know and I'll email it directly to you.Dear Family and Friends of the Wentes and Grovers,As many of you know, in August, 2004, our daughter, Wente, was diagnosed with Primary Sclerosing Cholangitis (PSC), an uncommon and currently incurable liver disease that may require a transplant some time down the road unless a cure is found. Up until recently, has been asymptomatic – after a recent procedure to "unclog" her bile ducts, it is our goal to keep her that way for another few years.In January 2005, a 501©(3) not for profit Foundation dedicated to finding a cure for PSC and providing education and support for PSC patients and caregivers was created. Following is a partial list of our successes since our inception:-We are a totally volunteer foundation with an administrative expense of only 1.5% (Deb is the Treasurer).-Our active website (with information regarding our educational, support, and research activities) has an average of 30,000 hits per month.-Our PSC Literature site has 53,000 abstracts in the database covering all aspects of PSC and related diseases, which is accessed by physicians, researchers, and patients.-We created a brochure entitled "Living With PSC" which is available to PSCers, physicians, and caregivers. So far, 2800 brochures have been handed out nationally.-We hold annual national conferences for PSCers and caregivers. The first three were attended by about 100 participants each. -Our Medical Scientific Advisory Committee is actively engaged in deciding where to allocate our funds for PSC research. In 2006, our board of directors approved financial support for two types of PSC research:-$20,000 donated to STOPSC registry run by The Foundation-$3000 prize donated to the most promising junior PSC researcher to be awarded at the 2007 annual meeting of AASLD (American Association for the Study of Liver Diseases).The 2008 PSC Partners Seeking a Cure Conference will be held May 2-4, 2008 at the Mayo Clinic in ville Florida. Mile by mile we will walk/run/ride/swim across the country from the Denver Hyatt Tech Center to our next conference in ville, FL. We have 2,000 miles to cover!! Let's get going! Each mile is covered by raising $50.Please consider making a donation in 's name. All donations are tax deductible and go toward researching a cure for this specific disease and providing support and information to those who have it. Thank you,Deb, , and A tax-deductible donation of $50/mile in honor of Wente can be sent to: PSC Partners Seeking a CureThe Road to ville5237 So. Kenton WayEnglewood, CO 80111 More photos, more messages, more storage—get 2GB with Windows Live Hotmail. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2007 Report Share Posted July 17, 2007 I'm not sure how to send the Road to ville letter as an enclosure - can anyone tell me how? Please email me at debs_3@..., I'm not a regular reader of the posts. Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2007 Report Share Posted July 17, 2007 Hi Deb; I think you sent me a copy of the letter as a word document a few weeks ago. If you like, I could upload that file into the " files " section for you. Alternatively, I'm sure that Arne would be able to help. Let us know if one of these options would work for you. Best regards, Dave R. > > I'm not sure how to send the Road to ville letter as an > enclosure - can anyone tell me how? Please email me at > debs_3@..., I'm not a regular reader of the posts. > > Thanks. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2007 Report Share Posted July 17, 2007 > > Joanne, etc., > > I'm happy to share a copy of my Road to ville letter with > you. It's been incredibly successful, it's much easier for me to > reach out to a large number of people with a letter. And, no one > (practically ) is donating less than a mile! Deb - Thanks so much for the letter. It is so much easier for me to " modify a completed letter " than to start from scratch - and your letter is great! What a wonderful achievement you have done (for all of us and our families) by having so many people donate to the Road to ville! I believe you single handedly " walked us from somewhere in Colorado and got us into Kansas! So now our challenge is to move on to Florida! Thank You! Joanne H (, Ca., Mom to , 17, UC/PSC 2-06; Juvenile Rheumatoid Arthritis 1998) Quote Link to comment Share on other sites More sharing options...
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