P.A.N.D.O.R.A.
Information
1 Voice, 1 Community, 1 Cause. Our creative approach to advocacy & service to the neuroendocrineimmune community since 2002, enabled us to become a positive & prominent force despite a micro budget. Join our patient revolution. Sign up as a member.
Website: http://www.pandoranet.info
Location: Wherever there is an individual stricken by a neuroendocrineimmune disorder
Members: 30
Latest Activity: 1 day ago
One Strong Voice for Many
Let's Talk . . .
We are looking for more of those special individuals who really want to be active in creating change. We call them Advocates Extraordinaire - AE. Dedicated people to take on a specific project, lead it and follow it through to success. Want to know more? Click HERE and then send an email to Marly C. Silverman [msilverman@pandoranet.info]. Please also read the letter below regarding the CDC Vote of Confidence and the AE program/NEIDs Research Center project.
The results of the one single question poll will be shared with several New Jersey State Senators & Assemblyman as well as U.S. House Representatives during a meeting on September 16 to create additional support for the NeuroEndocrineImmune Center(tm) in New Jersey.
September 8, 2009
Here are some of the pictures of the FM-CFS Empowerment Group MTG on September 3, 2009, ini which Marly Silverman was the guest speaker. It was a nice reunion, since Marly was one of the co-founders of the group with Dawn Broksch in 2001. The group meets every first Tuesday of the month, unless a holiday interferes. click here." target="_blank">Click here for complete information about the group.
Seen below is Steve Kruger, group facilitator and a PANDORA member with Rosa Albert, Director, Hispanic Community Outreach.
OUR ANNUAL CHARITY YARD SALE - August 8, 2009 WAS A HUGE SUCESS!
Many thanks to The Ft. Lauderdale/Pompano Beach Neuroendocrineimmune Disorders Empowerment Group for hosting our ANNUAL YARD SALE!
We sold everything: Dresses, shirts, jeans, handbags, toys, books, ski clothing, sweaters, small electronics, custom jewelry, paintings and household items. If we didn't have it, you didn't need it!
P.A.N.D.O.R.A raised $595.50 and Emily
Roy , a 6-year old neighbor from across the street set up a lemonade stand with cookies and donated $34.50 to the event efforts. Total raised: $630.00.
Pictured below is Emily Roy. We are amazed by her desire to help the chronically ill.(I am experiencing some technical difficulties will try to post Emily's picture later).
Special Thanks to:
The Hillsbore Shore neighbors & friends who contributed with donated items on Beacon Street and to our neighborhood dry-cleaners: PRO-CLEANERS located at 914, Pompano Parkway, Pompano Beach, Florida 33069. Phone: 954-975-4763. Alvaro & Bibi Jaramillo, the owners of Pro-Cleaners, provided us with the clothing racks so we could display the clothing donated for the yard sale. Thank you Alvaro for your support of PANDORA and we wish you continuing success with your business.
We are grateful to the following board members and volunteers who participated before & during the Saturday's event:
Suely Campos, Teresa & Ed Reid, Yvette Taylor, Marly & Stephen Silverman, Sugar Smookler Howar, Janet & Emily Roy & Pam Roth!
Special appreciation to Cheryl & Matt Prchal for their donated items. Many neighbors from the area purchased some of our items at a great price.
UPDATE! WE RAISED $5,552.00 (including in-kind donations at the GILBERT'S FUND RAISING EVENT ON JUNE 8, 2009, WOW!
CLICK HERE FOR THE GILBERTS' FUND RAISING EVENT PICTURES. On June 8, 2009, We had a pre-release of the new documentary that Rik Carlson and Michael Thurston are producing titled INVISIBLE at the Gilbert's 17th Street Grill Dinner & a Movie. We raised $3,779.50. The food was wonderful, everyone had a great time and the hostess Beth Gilbert and her parents Lenore & Bob Gilbert were wonderful sponsors for this event. Dr. Nancy Klimas made a short presentation to the audience. We launched our on-site & an online auction on Ebay Giving Works.
A new line of products will be available our PANDORAONLINESTORE Soon..
you can click here. Please Keep checking because we rely on volunteers been able to input the items we have available for sale to benefit our mission.
Happy Bidding!
CDC VOTE OF CONFIDENCE POLL AND A CALL FOR ADVOCATES TO PARTICIPATE IN THE ADVOCATES EXTRAORDINAIRE PROGRAM/NEUROENDOCRINEIMMUNE DISORDERS RESEARCH CENTER PROJECT.
Dear Friends,
As we expand our Advocates Extraordinaire™ program, a project, which will allow hardcore advocates to effectively participating in specific grass roots initiatives that are crucially needed in our community. We invite you to be part of this grass roots initiative.
Currently, we are in the initial phase, which is to recruit individuals to participate. The number one requirement we have is that the individual be able to provide a more focused level of involvement towards any of the initiatives we will present and put in place.
The program is flexible in the extent that we understand that neuroendocrineimmune disorders wax & wane, therefore small teams will be established to get tasks accomplished. We hope to do this in a very simple format and as we go along everyone input will be asked and required. I am sure some tweaking will be necessary.
The number one priority of the Advocates Extraordinaire™ program is to establish Neuroendocrineimmune Disorders Research Centers in several geographical locations in the U.S. It will require a huge effort from our overall community along with focus, sheer resilience and dedication.
On phase one we will run concurrently 10 single question polls. The results of these polls will be taken to officials of the Centers for Disease & Prevention (CDC), to Congress, to the Department of Health and Human Services (DHHS), to Social Security Administration, and to other interested parties & government officials in the state and local levels.
As we released the first poll yesterday June 4, 2009, we ask you to assist us in spreading the word by using the text below:
"For two and half decades the CDC direction regarding the CFS research program, which includes prevention, course of treatment, medical provider education and public information has been controversial, divisive and spotty at best.
P.A.N.D.O.R.A.- Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy, Inc, a charitable (501 c 3) organization advocating for the chronically ill and an organization that I support, is launching a nationwide & international advocacy alliance with strategical partners around the world, for the main purpose for the establishment of Neuroendocrineimmune Disorders Research Centers in the U.S. and overseas. This is the first poll of a proposed 10 single poll questions. I ask that you participate in the poll link below.
P.A.N.D.O.R.A. along with the strategical partners' alliance will then take the answer results to the CDC, to Congress, to the National Institute of Health (NIH), to the Social Security Administration, to the Department of Health and Human Services (DHHS) officials and other interested parties. So please join me, and our voices will be stronger.
ONE VOICE, ONE COMMUNITY, ONE CAUSE!"
Click on the link below to answer the survey.
http://survey.constantcontact.com/poll/a07e2j0j8jpfvjw46k4/start.html
Thank you for helping P.A.N.D.O.R.A. and I to bring a change and a new direction, so crucially needed in the neuroendocrineimmune disorders community of suffering. You are making a difference! "
Next you sign on the bottom of the letter or e-mail and that is it, you have already take the first step in becoming an Advocate Extraordinaire™! The next step is to send me an e-mail at msilverman@pandoranet.info and sign up for the project mentioned here – The Neuroendocrineimmune Disorders Research Center (Institutes).
Don’t forget to participate in the poll!
In Good Health and In Beauty,
Marly (Marla) C. Silverman
Founder
P.A.N.D.O.R.A
www.pandoranet.info
Built on Hope ★ Strong on Advocacy ★ Finding a Cure through Research
We are looking for more of those special individuals who really want to be active in creating change. We call them Advocates Extraordinaire - AE. Dedicated people to take on a specific project, lead it and follow it through to success. Want to know more? Click HERE and then send an email to Marly C. Silverman [msilverman@pandoranet.info]. Please also read the letter below regarding the CDC Vote of Confidence and the AE program/NEIDs Research Center project.
The results of the one single question poll will be shared with several New Jersey State Senators & Assemblyman as well as U.S. House Representatives during a meeting on September 16 to create additional support for the NeuroEndocrineImmune Center(tm) in New Jersey.
September 8, 2009
Here are some of the pictures of the FM-CFS Empowerment Group MTG on September 3, 2009, ini which Marly Silverman was the guest speaker. It was a nice reunion, since Marly was one of the co-founders of the group with Dawn Broksch in 2001. The group meets every first Tuesday of the month, unless a holiday interferes. click here." target="_blank">Click here for complete information about the group.
Seen below is Steve Kruger, group facilitator and a PANDORA member with Rosa Albert, Director, Hispanic Community Outreach.
OUR ANNUAL CHARITY YARD SALE - August 8, 2009 WAS A HUGE SUCESS!
Many thanks to The Ft. Lauderdale/Pompano Beach Neuroendocrineimmune Disorders Empowerment Group for hosting our ANNUAL YARD SALE!
We sold everything: Dresses, shirts, jeans, handbags, toys, books, ski clothing, sweaters, small electronics, custom jewelry, paintings and household items. If we didn't have it, you didn't need it!
P.A.N.D.O.R.A raised $595.50 and Emily
Roy , a 6-year old neighbor from across the street set up a lemonade stand with cookies and donated $34.50 to the event efforts. Total raised: $630.00.
Pictured below is Emily Roy. We are amazed by her desire to help the chronically ill.(I am experiencing some technical difficulties will try to post Emily's picture later).
Special Thanks to:
The Hillsbore Shore neighbors & friends who contributed with donated items on Beacon Street and to our neighborhood dry-cleaners: PRO-CLEANERS located at 914, Pompano Parkway, Pompano Beach, Florida 33069. Phone: 954-975-4763. Alvaro & Bibi Jaramillo, the owners of Pro-Cleaners, provided us with the clothing racks so we could display the clothing donated for the yard sale. Thank you Alvaro for your support of PANDORA and we wish you continuing success with your business.
We are grateful to the following board members and volunteers who participated before & during the Saturday's event:
Suely Campos, Teresa & Ed Reid, Yvette Taylor, Marly & Stephen Silverman, Sugar Smookler Howar, Janet & Emily Roy & Pam Roth!
Special appreciation to Cheryl & Matt Prchal for their donated items. Many neighbors from the area purchased some of our items at a great price.
UPDATE! WE RAISED $5,552.00 (including in-kind donations at the GILBERT'S FUND RAISING EVENT ON JUNE 8, 2009, WOW!
CLICK HERE FOR THE GILBERTS' FUND RAISING EVENT PICTURES. On June 8, 2009, We had a pre-release of the new documentary that Rik Carlson and Michael Thurston are producing titled INVISIBLE at the Gilbert's 17th Street Grill Dinner & a Movie. We raised $3,779.50. The food was wonderful, everyone had a great time and the hostess Beth Gilbert and her parents Lenore & Bob Gilbert were wonderful sponsors for this event. Dr. Nancy Klimas made a short presentation to the audience. We launched our on-site & an online auction on Ebay Giving Works.
A new line of products will be available our PANDORAONLINESTORE Soon..
you can click here. Please Keep checking because we rely on volunteers been able to input the items we have available for sale to benefit our mission.
Happy Bidding!
CDC VOTE OF CONFIDENCE POLL AND A CALL FOR ADVOCATES TO PARTICIPATE IN THE ADVOCATES EXTRAORDINAIRE PROGRAM/NEUROENDOCRINEIMMUNE DISORDERS RESEARCH CENTER PROJECT.
Dear Friends,
As we expand our Advocates Extraordinaire™ program, a project, which will allow hardcore advocates to effectively participating in specific grass roots initiatives that are crucially needed in our community. We invite you to be part of this grass roots initiative.
Currently, we are in the initial phase, which is to recruit individuals to participate. The number one requirement we have is that the individual be able to provide a more focused level of involvement towards any of the initiatives we will present and put in place.
The program is flexible in the extent that we understand that neuroendocrineimmune disorders wax & wane, therefore small teams will be established to get tasks accomplished. We hope to do this in a very simple format and as we go along everyone input will be asked and required. I am sure some tweaking will be necessary.
The number one priority of the Advocates Extraordinaire™ program is to establish Neuroendocrineimmune Disorders Research Centers in several geographical locations in the U.S. It will require a huge effort from our overall community along with focus, sheer resilience and dedication.
On phase one we will run concurrently 10 single question polls. The results of these polls will be taken to officials of the Centers for Disease & Prevention (CDC), to Congress, to the Department of Health and Human Services (DHHS), to Social Security Administration, and to other interested parties & government officials in the state and local levels.
As we released the first poll yesterday June 4, 2009, we ask you to assist us in spreading the word by using the text below:
"For two and half decades the CDC direction regarding the CFS research program, which includes prevention, course of treatment, medical provider education and public information has been controversial, divisive and spotty at best.
P.A.N.D.O.R.A.- Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy, Inc, a charitable (501 c 3) organization advocating for the chronically ill and an organization that I support, is launching a nationwide & international advocacy alliance with strategical partners around the world, for the main purpose for the establishment of Neuroendocrineimmune Disorders Research Centers in the U.S. and overseas. This is the first poll of a proposed 10 single poll questions. I ask that you participate in the poll link below.
P.A.N.D.O.R.A. along with the strategical partners' alliance will then take the answer results to the CDC, to Congress, to the National Institute of Health (NIH), to the Social Security Administration, to the Department of Health and Human Services (DHHS) officials and other interested parties. So please join me, and our voices will be stronger.
ONE VOICE, ONE COMMUNITY, ONE CAUSE!"
Click on the link below to answer the survey.
http://survey.constantcontact.com/poll/a07e2j0j8jpfvjw46k4/start.html
Thank you for helping P.A.N.D.O.R.A. and I to bring a change and a new direction, so crucially needed in the neuroendocrineimmune disorders community of suffering. You are making a difference! "
Next you sign on the bottom of the letter or e-mail and that is it, you have already take the first step in becoming an Advocate Extraordinaire™! The next step is to send me an e-mail at msilverman@pandoranet.info and sign up for the project mentioned here – The Neuroendocrineimmune Disorders Research Center (Institutes).
Don’t forget to participate in the poll!
In Good Health and In Beauty,
Marly (Marla) C. Silverman
Founder
P.A.N.D.O.R.A
www.pandoranet.info
Built on Hope ★ Strong on Advocacy ★ Finding a Cure through Research
Discussion Forum
NOT AN ORDINARY MOTHER'S DAY IN BUNCOMBE COUNTY, NORTH CAROLINA:The Plight of Lisa Baldwin and her son Ryan. 8 Replies
Started by Marly Silverman. Last reply by Marly Silverman Jun 25.
EUROPEAN THINK TANK BEING ESTABLISHED FOR ME-CFS 10 Replies
Started by Marly Silverman. Last reply by Marly Silverman Jun 19.
CFSAC MTG MAY 28 2009
Started by Marly Silverman May 28.
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4 Comments
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Comment by Dawn Holt on October 9, 2009 at 1:15am -
In this months issue of Neurology Now there is a really Great article on Fibromyalgia it's called "Is Fibromyagia Real?" I wanted to share it with you all.
http://www.neurologynow.com/pt/re/neuronow/fulltext.01222928-200905050-00024.htm;jsessionid=KTFf1ZP4XQJ7k0Mvqk1L1WGrHJ1j3xBLQDX6Y8f24lYcLBpchZLk!-2135654213!181195629!8091!-1?index=1&database=ppvovft&results=1&count=10&searchid=1&nav=search
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Comment by Marly Silverman on May 7, 2009 at 9:33pm -
Dr. Hyman, You are on! I know that the groups we support will be thrilled to have you. We have several events coming up soon. On May 12, the pre-release screening of the documentary Invisible, then on June 2nd another showing of the same documentary in a small fundraising for PANDORA. We look forward to seeing you there!
Marly
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Comment by Herbert L. Hyman M.D., FACP on May 7, 2009 at 9:10pm -
While P.A.N.D.O.R.A. is a national organization, I know that many of it's members are located in South Florida and to all of you I would like to make the following offer:
I would be pleased to meet with any ME/CFS & FM support groups which meet within 35 miles of West Palm Beach. While I am retired from active practice, I nonetheless have kept current with medical research as well as studies on ME/CFS and would be pleased to discuss such health matters as might arise.
Should you be interested, please send Dan Moricoli or me an email with your request.
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Comment by Dan Moricoli on May 7, 2009 at 9:09pm -
Congratulations Marly -
As usual, you are the innovator once again in starting the first ME-CFSCommunity social network group for P.A.N.D.O.R.A. We are very proud of your association with us and the opportunity you have given us to serve you and your members.
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