I generally don't post because of limited energy and brain power. I have been working with the MCWPA since I met Tina at the NJSFA conference in Oct and Marly at the CFSAC in October. My family is like the whose who of NEI. I personally tested neg to a XMRV culture, but am awaiting to be called back for serology. I'm told it is likely to be another 8 months before I get results back. Meanwhile, I have a younger brother, who has recently finished chemo and radiation after finding squamas (sp?) in his lymph. My step father is battling lung cancer. My Dad had a myeloproliferative (sp?) disorder and prostate cancer. My Mom, daughter and niece have fibro. My son has severe ADHD...and the list goes on.
I am thrilled to see this thread going on the forum! I have been working with Muffin to come up with more advocacy efforts that also raise funds for the press release. We plan on taking the next positive XMRV study and getting it out to the public with the same fervor as was done with the WP ad.
We will be launching the zazzle store shortly (
www.zazzle.com/mcwpastore). Please take a look at it and let us know if there are any additional slogans you'd like to see on tees and other items. We have cafepress out there now (
www.cafepress.com/mcwpa), but zazzle will allow us to easily add slogans to merchandise.
I have looked into silicon wrist-lets, but need a way to distribute them. I was going to buy 100 myself and pass them out myself. I was thinking of blue, but perhaps red is an idea. I wonder if people might confuse red with AIDS though. If we had a few volunteers to do mailing, I could order them and have them shipped out directly to volunteers. We already have google form to collect addresses that Lynn made. What do you all think?
Here are the results of the last patient survey, and therefor the order of priorities:
Send press release announcing next big biological finding in ME/CFS- 67%
Public service announcements to be aired on T.V. and airports- 50%
Support "Doctors Need to Know" information campaign- 49%
Design a print ad and give coop money for orgs to run May 12- 35%
Send letters to patient organizations of other illnesses associated with retrovirus- 35%
Tom Hennessey had a great idea to get a college glee club in the DC area and do a flash mob kind of thing at a DC mall to raise awareness. I love the idea, but we would need some volunteers to make an effort like that to happen. My point is that there are terrific ideas out there, let's keep them coming!
Karen