I am here in Washington DC on my way to attend the May5-6, 2008 CFS Advisory Committee meeting at the DHHS. I am excited as I heard that several patient advocates are flying in from different parts of the country to submit their testimonies. This indicates to me that I may not have as many empty chairs for our advocacy project which is exactly the results that we like to see.
I have letters from CFS patients from several states and their pictures as well to place in the empty chairs. I am meeting with some congressional staffers tomorrow. Dr. Kenneth Friedman, our Secretary and Chairman of our Public Policy committee will make a presentation at this meeting regarding initiative or methods to get medical students to learn about CFS-ME. We are excited about his presentation because the methods he spearheaded at the NJCFS Association is something that other organizations can follow. P.A.N.D.O.R.A. has expanded their original initiative and we have established community grants which will be disbursed in the coming months. The first community grant from P.A.N.D.O.R.A. was given to DePaul University for the Chronic Ill Student Patient program. The second one was an advocacy grant given to the CFIDS Association of America, Inc. Complete details on these grants and about our entire community grant initiative will be going out soon. Please check our web site on May 12, 2008 - Our International Awareness Day - One special gift that Tom Hennessy Jr. gave us when he worked valiantly for the rights of CFS and Neuroendocrineimmune Disorders Patients worldwide.
I will provide you with some pertinent information as the meeting progresses and when I am able to log on the net.
As May 12 approaches, the cities of Murhpy-North Carolina, as well as the cities in Florida of Delray Beach, Pembroke Pines,Lighthouse Point and Boca Raton have issued letter proclaming May 12, 2008 - PANDORA's Neuroendocrineimmune Disorders Awareness Day in their cities. More to come soon...
Life is Good!
Marla Silverman
3 comments:
I applaud your wonderful efforts and will follow with great interest any reports coming from you. I've had to give up as a co-leader due to aging health issues on top of ME/CFS/FM.
I do have one question, is there an article I can read that explains how you came about to decide on your name of "Neuroendocrineimmune Disorders".
Keep up the great work I look forward to the report on the CFSAC meeting.
Dear Nancy,
I appreciate your caring feedback and your words of encouragement! All that we do is in baby steps but when all taken together it really makes a difference. I too am concerned about aging issues...and there is why I am tryin to mentor other younger advocate to follow behind me. If it wasn't for individuals like you who were the pioneers in our advocacy movement I would not have been able to be diagnosed as quickly as I did. I am quite grateful to you!
Please spread the word about our efforts and of my personal blog so others can assist me in baby steps to get what we need: Centers of Excellence for our community of suffering and other initiatives.
It is on my list of things to write an article on the reasons why we decide to embrace the word neuroendocrineimmune disorders. So far I have been answering this question face to face when folks ask me. Our new brochure provides a quick overview of the reasons, but there was also a personal AHA moment or what I have also called a moment of Grace.
More to come soon.
Marla
Hi Nancy,
Can you believe it has been a year since you left a comment on this blog? Since then we have been in touch at me-cfscommunity.com. I am thrilled that we are now a thriving social & political community. We can now begin to fully ascertain our power by speaking out and standing up for individuals with neuroendocrineimmune disorders. Check out my latest post on the CFSAC on Agent for Change blog or at
http://cfsknowledgecenter.ning.com/profiles/blogs/dhhs-is-seeking-nominations. Please participate in the single question polls that it is in this blog and also. On me-cfscommunity.com I also posted a single poll question about the CDC too.
Click on the link below to answer the survey.
http://survey.constantcontact.com/poll/a07e2j0j8jpfvjw46k4/start.html
Thank you!
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