Wednesday, June 16, 2010
Tuesday, May 4, 2010
'News from P.A.N.D.O.R.A. - May 2010'
Dear Friends,
I am on vacation with hubby but I want to share with you the latest PANDORA's newsletter. May is PANDORA's Awareness Month for Neuroendocrineimmune disorders. We have several events in South Florida that we are sponsoring and/or supporting, starting with May 8, 2010 lecture by Dr. Nancy Klimas, then May 11 meeting at the Center for Independent Living (CILB) then the event on May 12, in Boca Raton for Fibromyalgia and related chronic illnesses and finally the events on May 12 by the Fibromyalgia Support Group of Boynton Beach. We have also gathered proclamation day letters from the cities of Murphy, North Carolina, Columbus, Ohio and Pompano Beach, Florida declaring May 12, P.A.N.D.O.R.A.'s International Awareness Day for Neuroendocrineimmune Disorders. Click on the link below for complete information on these events and much more.
Happy Mother's Day!
We hope you will participate in these events if you live in South Florida and if not please join one in your neighborhood. There will be so many events worldwide celebrating and empowering members of our overall community.
Take ownership of your future by donating today towards the NEI Center(tm) in New Jersey.
Marly Silverman
Saturday, April 17, 2010
'News from P.A.N.D.O.R.A. - April 2010'
MITCH PAGEREY RACING FOR A CURE FOR NEUROENDOCRINEIMMUNE DISORDERS SUPPORTING P.A.N.D.O.R.A.'S EFFORTS - LONG BEACH, CALIFORNIA - April 16-17, 2010
Hi Everyone, I want to share with you P.A.N.D.O.R.A.'s latest newsletter. This weekend
April 17-17, 2010, Mitch Pagerey is racing for a cure for Neuroendocrineimmune Disorders. Vroom, Vroom, Go Mitch! Check out the NEI Center logo on his suit and the PANDORA's patch on his sleeve. Then look at the beautiful new logo of PANDORA painted on his car. Vroom,Vroom, Vroom. Life is good!
'News from P.A.N.D.O.R.A. - April 2010'
Saturday, April 3, 2010
Motorsport.com: Photos channel
I am sharing this with you even before our press release goes out. I could not wait! This is so cool! Here are some of the pictures of Mitch Pagerey and his team at the 12 hours Sebring, Florida. Please note the NEI CENTER patch on his suit and and the PANDORA logo on car 89. Mitch is racing for a cure for Neuroendocrineimmune Disorders. Check out these pictures. We are so grateful to Mitch for his support of P.A.N.D.O.R.A. Vroom, Vroom, Vroom.
Motorsport.com: Photos channel
Motorsport.com: Photos channel
Monday, March 15, 2010
'NEWS: NEI Center Resolution Awaits Passage in New Jersey Senate'
Fellow Bloggers,
I am so proud to share that we are on our way to PHASE 2 of the NEI Center patient driven community project. Here is the latest on this grass roots efforts. Spread the word!
'NEWS: NEI Center Resolution Awaits Passage in New Jersey Senate'
I am so proud to share that we are on our way to PHASE 2 of the NEI Center patient driven community project. Here is the latest on this grass roots efforts. Spread the word!
'NEWS: NEI Center Resolution Awaits Passage in New Jersey Senate'
Monday, March 8, 2010
'News from P.A.N.D.O.R.A. - March 2010'
Bloggers,
Here is P.A.N.D.O.R.A.'s latest newsletter. It includes the link to the NEI Center website. Share it with others
'News from P.A.N.D.O.R.A. - March 2010'
Here is P.A.N.D.O.R.A.'s latest newsletter. It includes the link to the NEI Center website. Share it with others
'News from P.A.N.D.O.R.A. - March 2010'
Wednesday, March 3, 2010
'Ryan Baldwin case is an ominous wake-up call'
Due to a longer unexpected relapse (is there any other kind when you have CFS?) I haven't been blogging much. P.A.N.D.O.R.A.'s facebook page and dealing with some other family health issues have taken care of my time and stamina. Although advocacy is a hobby for me, sometimes one has to walk way to recharge one's batteries. The statement you are about to read is truly important not only to parents with children with CFS-ME, but to parents with the neuroendocrineimmune disorders (NEIDs) P.A.N.D.O.R.A. also embraces:
Fibromyalgia, Multiple Chemical Sensitivity, Chronic or Persistent Lyme Disease.
The Pediatrics & Family Conference is to be held in the Asheville area. Asheville as you will read by clicking on the link below is a gorgeous mountainous area - the Blue Ridge Mountains - and famous for their celebrity homes and art. But Asheville is also the the back drop for what I qualify as "an institutional ingrained uneducated medical view (by physicians in North Carolina) and in other metropolitan areas of the country in regards to CFS-ME and other related chronic illnesses.
Our goal with this conference, is to highlight the continuing inadequacies (despite) years of the CDC medical provider education complemented by the public educational campaign with the CFIDS Association. Despite the hardwork from the CAA, we, patients with CFS-ME are still dealing with the fact that there are still only a dozen of CFS specialists in a few states treating CFS-ME patients, who are reaching retirement age, and the fact that the number of primary physicians in the 50 states only have a mediocre understanding of CFS potential treatments.
For the past two years when making my personal presentation to the CFS Advisory Committee board I brought the fact that if there are no American physicians willing to learn, to educate themselves about the potential treatments for CFS-ME (as well as the other NEIDs) that P.A.N.D.O.R.A. embraces. And, since this has not changed and it does not seem that it will change despite of all the advocacy that organizations have created, then we must import foreign physicians from other countries to do the work that their American counterparts are not doing or willing to do.(We will have to do that anyway, when health care reform comes to place and I hope soon.) At P.A.N.D.O.R.A. we have taken this to heart. We assisted Dr. Lina Garcia in getting her working visa to the U.S. Dr. Garcia is now going through the medical board licensing rigorous process so she can start a residency program and then open her practice for CFS-ME, FM and GWS private practice if she does not go into scientific research for neuroendocrineimmune disorders. For about 3 years now she has been under the supervision of Dr. Nancy Klimas at the University of Miami, CFS clinic in downtown Miami. By the time she will be done with this training she will be able to apply it to her residence training rotation and teach other physicians in the process too.
For now I ask you to read P.A.N.D.O.R.A.'s statement and get involved in any way you can in acting as an advocate. One opportunity will be to join our Advocate Extraordinaire program. E-mail me thorugh our contact page on our site, and I will add your name to the growing list of Advocate Extraordinaire who are getting ready to make a difference.
'Ryan Baldwin case is an ominous wake-up call'
Fibromyalgia, Multiple Chemical Sensitivity, Chronic or Persistent Lyme Disease.
The Pediatrics & Family Conference is to be held in the Asheville area. Asheville as you will read by clicking on the link below is a gorgeous mountainous area - the Blue Ridge Mountains - and famous for their celebrity homes and art. But Asheville is also the the back drop for what I qualify as "an institutional ingrained uneducated medical view (by physicians in North Carolina) and in other metropolitan areas of the country in regards to CFS-ME and other related chronic illnesses.
Our goal with this conference, is to highlight the continuing inadequacies (despite) years of the CDC medical provider education complemented by the public educational campaign with the CFIDS Association. Despite the hardwork from the CAA, we, patients with CFS-ME are still dealing with the fact that there are still only a dozen of CFS specialists in a few states treating CFS-ME patients, who are reaching retirement age, and the fact that the number of primary physicians in the 50 states only have a mediocre understanding of CFS potential treatments.
For the past two years when making my personal presentation to the CFS Advisory Committee board I brought the fact that if there are no American physicians willing to learn, to educate themselves about the potential treatments for CFS-ME (as well as the other NEIDs) that P.A.N.D.O.R.A. embraces. And, since this has not changed and it does not seem that it will change despite of all the advocacy that organizations have created, then we must import foreign physicians from other countries to do the work that their American counterparts are not doing or willing to do.(We will have to do that anyway, when health care reform comes to place and I hope soon.) At P.A.N.D.O.R.A. we have taken this to heart. We assisted Dr. Lina Garcia in getting her working visa to the U.S. Dr. Garcia is now going through the medical board licensing rigorous process so she can start a residency program and then open her practice for CFS-ME, FM and GWS private practice if she does not go into scientific research for neuroendocrineimmune disorders. For about 3 years now she has been under the supervision of Dr. Nancy Klimas at the University of Miami, CFS clinic in downtown Miami. By the time she will be done with this training she will be able to apply it to her residence training rotation and teach other physicians in the process too.
For now I ask you to read P.A.N.D.O.R.A.'s statement and get involved in any way you can in acting as an advocate. One opportunity will be to join our Advocate Extraordinaire program. E-mail me thorugh our contact page on our site, and I will add your name to the growing list of Advocate Extraordinaire who are getting ready to make a difference.
'Ryan Baldwin case is an ominous wake-up call'
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