Monday, December 6, 2010
My special gratitude goes to Tina Tidmore, Sita Harrison, Kathryn Stephens, Sharon Stapleton, Andrea Pring, Karen Ravitz, Lynn Bousquet.
To the organizations who supported the advertisement in The Washington Post: P.A.N.D.O.R.A. Inc., Vermont CFIDS Association, Inc., R.E.S.C.I.N.D., Rocky Mountain CFS/ME and FM Association and the Wisconsin ME/CFS Association, Inc.
To the creative bunch of CFS-ME patients who designed incredible ads projecting our unique voice, I am grateful.
To the Time for Action team : Charlotte von Salis, Bob Miller and Rivka, I am grateful.
To the angel donors who donated generously, I am grateful.
To patients who contributed generously to the cause, I am grateful.
To everyone who believed in the cause-project, WE are grateful.
Click in the link below and give yourself a pat in the back, because WE are no longer invisible. The best is yet to come.
Chronic Fatigue Syndrome Patients Run First-ever Ad in The Washington Post
One Voice, One Community, One Cause(tm)
P.S.: Please visit MCWPA.org today. Donate to the cause-project as generously as you can.
Thursday, November 11, 2010
|by Marly Silverman|
Monday, July 12, 2010
Patient Alliance for Neuroendocrineimmune... Disorders Organization for Research & Advocacy, Inc. (this is how you have to search for us if you need.) DBA as P.A.N.D.O.R.A., the charity I founded, is holding a very good ranking on Chase Community Giving. We are the only organization from within our overall Neuroendocrineimmune Disorders (NEIDs) Community that has made to the top 200 ranking now at number 140 with 1,1303 votes. You can vote for us at http://apps.facebook.com/c
We have accomplished this amazing task with the support of individuals like Frank OpDeBeeck,who created a tutorial video to get us on the top 200 and many more, including Phil Campos, who produced the video for the contest, Andrea Martell, Rik Carlson, Sus Cue-Sagman, Michelle Lonchar, Gaston Gingues, Andrea Pring, Pat LaRosa, Cort Johnson, Blair Miller, Betty McConnel, Sandi Lanford, Ashely VanTol, Martina M Punktchen, Claire Randall, Nancy K Jay, Thomas Hennessey, Keith Baker, Lisa Baldwin, and so many more. You know who you are and we are grateful to you all!
We are also grateful to our board members on Facebook who are asking their friends to vote and to the National Fibromyalgia Association, The CFIDS Association and the Whittemore Peterson Institute for posting on their Facebook pages asking their fans to vote for P.A.N.D.O.R.A. too.
BUT if we do not get a significant spike on the number of daily votes for our organization between now and July 12, the day the contest ends, we will lose the opportunity to receive a grant in the amount of $20,000.00. While for some of the larger organizations this may be a drop in the bucket, for us it is 95% of an entire year's budget. It is priceless!
Look at what we can do with $20,000.00:
1) Pay our phones, web site hosting, newsletters costs for 2010. Get a new computer that can handle new technology specifically for non-profits including a new efficient donor data base.
2) Continuing to position our organization and our strategical partners, so we can move on with our main project: The establishment of the NEI Center(TM), in New Jersey. It will take time and money to get this off the ground. http://www.neicenter.com/c
3) Get a new technologically updated web site that will continue to inform you and share what we do best.
4) Hire a part-time person to help us in the office to respond to an ever growing number of inquiries & assistance for individuals stricken with NEIDS.
5) Travel to DC to represent you at the CFSAC meetings, Pain Medical Conferences and at the IACFS-ME conference in Ottawa next year.
6) Collaborate with other organizations through our micro-grants for medical students, educational conferences and advocacy/lobbying efforts in the U.S. and abroad.
7) Expand the Quality of Life Advocate Program: Patient Advocates helping others and "paying forward".
8) Expand the Advocate Extraordinaire Program for PANDORA - http://www.neicenter.com/a
9) Cost of educational brochures (art work, printing and mailing)
10) Support of empowerment groups in Florida and beyond.
11) Provide support to parents with children stricken with NEIDs.
12) Create PSAs for the illnesses we embrace and expand PANDORATV on youtube.com - http://www.youtube.com/use
13) Strengthen our national and international advocacy and grass-roots initiatives.
These efforts combined with a Chase Community Giving grant will strengthen an organization that is patient-driven and physician approved.
Please vote today for Patient Alliance for Neuroendocrineimmune...(DB
if you haven't voted yet, we will run the risk of losing our current rankings and end up with NOTHING. You would not want this to happen... would you?
Often I hear that no one cares about our community. That the lack of respect, lack of money for research & patient treatment, and lack of awareness for the plight of millions is the norm. Well, here with Chase Community Giving we have the PERFECT OPPORTUNITY to get all of the 3 major concerns we all have in one swoop. As a matter of fact with the number of individuals stricken with CFS-ME and fibromyalgia, our organization could have been on the top 5, competing for the $250,000.00 and $100,000.00 grants.
Make sure you Vote for PANDORA NOW - today and for the other organizations that too share a similar mission with us. We cannot afford to miss this wonderful opportunity. If we are able to get another 5 or more orgs on the top 200, we are speaking of a cash injection in our advocacy movement of at least $120,000.00. To see the list of the organizations suggested by advocates go to http://www.facebook.com/no
Here is the link again: http://apps.facebook.com/c
Thank you for your support! We can win this grant! All we need is your vote.
In Good Health and In Beauty,
Marly Silverman, Founder, P.A.N.D.O.R.A. - www.pandoranet.info
Co-founder: The NEI Center(tm) - www.neicenter.com
Wednesday, June 16, 2010
Here is the link to vote for P.A.N.D.O.R.A. on Chase Community Giving contest. We are now number 53 on the top 200 list of charities and we are moving up too quickly. WPI is now number 17 on the top 200.
Please support this effort. We really have a great chance to get some funding for PANDORA to be able to continue to get our main effort: The NEI Center and other worthwhile efforts off the ground.
Chase Community Giving on Facebook
Here also is the link that will take you to a page that Frank Op De Beeck from Phoenix Rising has created specially for this contest and in order to support the work of P.A.N.D.O.R.A. and WPI.
Cast your vote today:
Here is the link to vote for P.A.N.D.O.R.A. if you already voted for WPI.
Here is the link to vote for WPI if you already voted for P.A.N.D.O.R.A.
Here is another organization that you can vote too using the 5 votes you have for this round:
I have contacted The Vermont CFIDS Association, the Wisconsin CFS-ME Association and the New Jersey CFS Association asking them to ensure they are registered too so we can vote for them too and when we do we can get a Gift Vote that we can then give to a friend to vote again either on WPI or PANDORA or any other of the organizations within these 5 or any of the organizations of your liking.
Cast your vote today!
Tuesday, May 4, 2010
Saturday, April 17, 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
Monday, March 15, 2010
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
Wednesday, March 3, 2010
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'
Monday, January 18, 2010
I want to acknowledge a few from the U.S. today: Susan Cue-Sugman, Jill Serotta (who is taking a break for now) and Mary Ann Parker. These amazing ladies have spent hours posting relevant materials and responding to question that often pop up on our social sites.
I am grateful for their commitment and support of P.A.N.D.O.R.A. They are indeed Advocates Extraordinaire!
P.S.: Please note that in order to see the links for Sus and Jill you must log in to Facebook or sign up for it.
Monday, January 11, 2010
This was sent to me by a subscriber and friend of PANDORANET, our youtube.com page. The person along with her family who did the video and cooked the delicious soup are from South Florida. The Broward County homeless agency listed here is coincidentally one of the agencies many of our members have supported in the past with gifts of food for their pantry. Random Acts of Kindness and amazing acts of beauty. Thought this could lift you up.
'Click the Share button to create links to this email on popular social networking and bookmarking size like Facebook, Twitter, and Digg.'
'Click the Share button to create links to this email on popular social networking and bookmarking size like Facebook, Twitter, and Digg.'
1Voice, 1Community, 1 Cause(TM)
Wednesday, January 6, 2010
The writings below now revised for you,is one that I sent today after learning of the passing of a fellow brother within our community. The e-mail was sent to the the leaders of the many organizations that embrace CFS or other neuroendocrineimmune disorders or illnesses, some politicians, and to some members of the Department of Health and Human Services.
Back in 2003 and later on 2004 on a conversation with several individuals I used the term "failure to thrive" which shocked some. I stated that our overall community (including physicians and researchers too) were in an environment that was not conducive to growth in the angles that are necessary for our community to thrive. For patients is the quality of life issue that are overbearing. For physicians is the lack of knowledge and science that can guide them to treat their NEI patients. For researchers is the lack of will from the government and other potential interested parties that results in dismay funding for CFS and other NEIDS. It is a chain reaction that creates such human pain and despair of great proportion.
It was not until the sad news of the death of a fellow brother in illness, that I became aware of a blog titled "Failure to Thrive". Powerful words aren't they?
I am deeply concerned that Jack's writings (of blessed memory) shared with us.. that he was not a "young one". He had lived a great life and yet because of his current circumstances, his spirit became broken and worse yet, his body lost the connection with his soul resulting in the loss of the will to live.
Therefore I dare to ask the question: isn't then CFS a mind,body, soul illness like any other severe and debilitating chronic illness that robs people of their quality of life and dignity? Isn't CFS an illness that robs individuals of their humanity? As members of our community of suffering we need to be open for this discussion and to pursue a healthy debate that although CFS is not a psychiatric or mental health illness, it can certainly place individuals in this fragile realm, resulting in a forsaken reality that propels individuals to commit suicide.
How many more losses will this community of suffering have to bear before we unite as 1 Voice, 1 Community, 1 Cause ?
With some heavy heart, at least I see glimpses of potential hope. The WPI efforts with great potential being realized now. The NIH trying to replicate the XMRV virus using the same protocol, ME-CFS community.com, efforts underway in Europe to get an advocacy movement that is strong; the IACFS-ME conference in Canada, the CAA making research a priority, the NJ CFS Association, the Wisconsin CFS Association, the Vermont CFIDS Association ongoing medical student efforts, Phoenix Rising, Pro-Health, Facebook groups who are creating such an awareness to our cause that is awesome! And obviously our own efforts for the establishment of the NEI Center in New Jersey and in other satellite locations.
But the bottom line, and there is always one, is found in 3 simple words: QUALITY OF LIFE - This decade starting in 2010, it should be the year for all of our organizationsto concentrate on this theme. From this day forward for the next 10 years, it should be the QUALITY OF LIFE DECADE FOR THE NEI COMMUNITY. It should be the decade to bring, enhance and create QUALITY OF LIFE for the individuals we all claim to represent. We must make this our main priority and you too the patient needs to be part of this monumental effort in whatever way you can.
I wish you all a Happy Healthy and Prosperous New Year!
In mourning for Jack DeLuca
Debbie Anderson sent me the address to where you can send your sympathy cards to:
1510 Sullivan Trail # B
Easton, PA 18040