We are just about 7 days before the next CFSAC Meeting in Washington DC on October 29-30, 2009. This video should get you fired up to attend such an important meeting. We, patients need to show up in great numbers. We need to carry signs, t-shirts, bring pictures for the Empty Chair Project and if you are going to speak during the assigned public testimony periods, please send me an e-mail at msilverman@pandoranet.info with your prepared text. I am attempting to publish and publicize every poignant testimony, even if it is barely a whisper like in the case of Laurel Bertrand let me know, so we can share your story as well before, during and after the meeting.
IT IS TIME FOR CHANGE!
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5 comments:
Hi Marly, I posted my testimony and my Mom's on my blog. We'll be there on Thursday. Mike Dessin also got in at the last minute.
Janis,
This is great! Do you know who are also the other patient advocates who will speak there too. I am bringing some ribbons I read on M.A.D about CFS group that Ruth is bringing some ribbons and I would like to connect with her. PANDORA would like to invite every advocate who is coming for the public testimony for lunch at the cafeteria which is in the same floor of the meeting room. Would you and your mother be able to join us for lunch? This is a take of our appreciation for you! Please spread the word and ask folks to contact me at msilverman@pandoranet.info
Marly
Marla
Very sorry I only found this today, Dec. 2nd, 2009
I was labeled with Fibromyalgia in 1993. The loss of a productive life continues to be a misnomer.
This is a serious loss of living to give to others. The hope of a real diagnosis (possibly related to the HPA Axis) is my prayer. That's where the beginning of real progress for a Cure begins. Thank you for being such a strong woman.
Becky in Wisconsin
Janis,
I have your video on line to be featured on our youtube.com page. Every week I plan to feature someone. I am so excited that we have so many videos and I am grateful to Ben for posting them for us. How is your lovely mom doing?
Marly
Dear Becky,
I am glad you found my blog and you are now aware of the work PANDORA does. This is the beginning of a new era for NEI (neuroendocrineimmune illnesses). We have to keep the momentum going. Glad you are joining us in creating additional awareness. One Voice, One Community, One Cause(tm).
Marly
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