As most of you know this blog and the Helping Tami website came about immediately after Tami's Myelodysplasia diagnosis in February of this year. It took me 8 solid weeks of talking to donor programs by phone (2 in Washington state, 3 in California, 1 in Hawaii and 1 in Massachusetts) and web surfing to build and finish her website and to figure out how to help by creating a donor drive effort.
I'm pretty web savvy and I found it overwhelming at times. There is a lot of great information out there but I found it scattered around all over the place. Even as I was soaking it all in I realized that many people would be thwarted by the lack of easily accessible information. So even as I was learning I was already planning in the back of my mind how to share this information with others in the future.
My goal is to make information packets available to transplant centers and doctor's offices nationwide so that as each new patient is diagnosed and is told they are in need of a marrow or stem cell transplant, they will be directed to the www.MarrowDrives.org website to learn how to launch a donor drive effort if they decide to publicize their need.
The www.MarrowDrives.org is still under development but there are already the first 6 steps I think most people should follow before launching their drive.
Many tutorials have been added and I will continue to add more ideas that I learn from other donor drive teams as well as ideas I think up on my own.
The tutorials are broken down into two areas: Online and Live In-person drive ideas. This way those who don't have computers or are not super computer savvy can still launch an effective local drive effort. Those who are web savvy can make use of all of the online suggestions And if there are enough volunteers ideas from both areas can be used.
Right now I'm working on my business card design. They will be part of the kits I'd like to make sure that newly diagnosed patients receive. This is the proposed front of the business card.
And this is the back of the business card.
The kits will also hopefully inspire other people to take up the cause within their place of work, worship or groups and clubs to launch donor drive efforts of their own. Because even if you don't currently know any of the 6000 Americans in need of a transplant, the odds are you will someday. There are many diseases like blood cancer and anemias that destroy a patient's marrow and their only hope for a cure is to find a willing and healthy marrow match. At this time 70% of patients in need will not receive a marrow match in time to save them.
To Read Tami's Story from the Beginning
Just CLICK HERE. Her blog begins on March 12, 2009 with a post titled "Tami's Myelodysplasia Diagnosis." Then at the bottom of each post, click on the words "Newer Post" located just below the comments section on each page.
Thursday, August 20, 2009
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