chronic fatigue syndrome, fibromyalgia, fms, cfs, empowerment groups, cfids

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PANDORA In The News

 

PHOTO CAPTION:
Lanford Foundation-Lifelyme, Inc. directors Josephine Cavallaro and Danette Whelan shown here with “Under Our Skin” producer Andy Wilson at a recent gala in New York hosted by Turn The Corner Foundation.

 

 

Click here for the Press Release

PDF file.

 

FOR IMMEDIATE RELEASE

1 December 2009

Media Contact: Corin Walson, APR
714-970-2268; corin@walsonpr.com

 

P.A.N.D.O.R.A. and Lanford Foundation applaud “Under Our Skin” for making

Oscar Short List

CORAL GABLES, Fla.---P.A.N.D.O.R.A. and the Lanford Foundation-Lifelyme™ today applauded the announcement by the Academy of Motion Picture Arts and Sciences that “Under Our Skin” was selected as one of the 15 finalists competing for “Best Documentary Feature” in the 82nd Academy Awards®.

Winner of several film festival awards, and hailed by critics from the New York Times to Vanity Fair, “Under Our Skin” follows the lives of several patients and exposes the hidden epidemic of Lyme disease, an infectious disease caused by the bacterium Borrelia burgdorferi that is transmitted to humans by bites from infected ticks. If left untreated, the infection can spread to joints, the heart, and the nervous system. Untreated or unsuccessfully treated Lyme disease leads to chronic and persistent disabling pain and frightening disabilities that affect hundreds of thousands of people in the U.S. Often these individuals are misdiagnosed or have their infections dismissed by physicians as being psychosomatic illness.  

“We are thrilled for filmmaker Andy Wilson and the patients who were courageous enough to share their stories in ‘Under Our Skin,’” said Marla Silverman, founder of the patient advocacy organization, P.A.N.D.O.R.A., Inc. (Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy). “For patients, this film is a victory towards better understanding and support from friends, family members, and their medical professionals.”

“Because of ‘Under Our Skin’ and Andy Wilson’s courage to bring this important issue to the big screen, patients suffering with chronic Lyme disease and told it’s all in your head will finally get the recognition that they deserve,” said Sandi Lanford, founder and president of the Lanford Foundation-Lifelyme based in Tallahassee, Florida.

Last September, the Lanford Foundation–Lifelyme hosted the film in Tallahassee with over 200 attendees on opening night, followed by a Q&A session. Several expert panelists participated:  Mandy Hughes, a Lyme patient whose story was featured in the film; Kerry Clark, PhD, professor/epidemiologist at UNF; and Carol Fisch, microbiologist and board member of the Lifelyme Foundation. “My phone was ringing off the hook for about a month after the showing of ‘Under Our Skin!’” Lanford recalled.

The Lanford Foundation- Lifelyme™, Inc., has also recently announced its major partnership with P.A.N.D.O.R.A., Inc. The two organizations are planning to establish a New Jersey-based NeuroEndocrineImmune (NEI) Center™ , the first research center to incorporate scientific and clinical research, quality in patient care, and social services—all in one state-of-the art facility.

“Under Our Skin” made the cut among 89 qualifying documentaries during the preliminary round of voting by the Documentary Branch Screening Academy Committee. Academy members will now select 5 nominees from among the 15 titles on the shortlist. Academy Awards nominations will be announced on Tuesday, February 2, 2010.

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The Vermont CFIDS Organization May 12, 2009 events was a huge success!

The highlight of their event was the grant that P.A.N.D.O.R.A. provided them for their medical school studen scholarship. The Vermont Assistant Secretary of Health attended the event and congratulated the organization for their efforts in establishing this much needed patient provider medical student education & incentive program. It gives meaning to the words Pay Forward in a most profound way. Click here for the video information and for the guest speakers attending this event. Dr. Kenneth Friedman, the force behind this effort was there sharing the programs that are being established nationwide and one in which P.A.N.D.O.R.A. is thrilled to participate.

06.20.2009

New Jersey Academy of Family Physicians

2009 Summer Celebration and Scientific Assembly

Dr. Ken Friedman has agreed to be a member of the faculty for the 2009 Summer Celebration and Scientific Assembly.

Topic: Diagnosis and Treatment of Chronic Fatigue Syndrome

Date: Saturday, June 20

Where: Atlantic City Convention Center, Room 202

Time: 4:00 pm - 5:00 pm

Phone: # 609-394-7712

Email: sarah@njafp.org

Web-site: www.njafp.org

University of Miami Department of Medicine Annual Report - 2008

University of Miami Health System - University of Miami Miller School of Medicine

Click here to view the page on Chronic Fatigue Syndrome (CFS) & Gulf War Illness (GWI).

Click here to view the entire University of Miami Annual Report 2008


11.13.08

EACH & EVERY THURSDAY!

Dr. Karen Sacks, LMHC is forming small (5 people) group counseling sessions that will teach "Tools for Life" established, in part, through her own experiences with Fibromyalgia.  There will be a special fee of $30 per session.  Meetings will take place at CIGC on Thursdays 1:00 - 2:30 p.m..

Center for Individual & Group Counseling

7301 West Palmetto Park Rd.

Suite 205 A

Boca Raton, Florida 33433

Call to reserve your place: #561-544-8889

01.07.2008

We received an e-mail containing the following information :

"The Board of Directors announce the dissolution of The Fibromyalgia Association Created for Education and Self-help [FACES], and Illinois 501 [c] [3].  visit www.fibrocop.org for more information until January 14, 2007."

Sabrina Johnson, its founder and one of the most hardworking advocates in our community, will continue to be involved with fibromyalgia issues in several special ways. She stated: "I have started 3 blogs:

http://www.fibrocop.blogspot.com to keep my foot in the Fibromyalgia Awareness Pool

http://www.beautyshouldnothurt.blogspot.com where I hopefully will get ideas about natural personal care products since I have developed sensitivities/allergies to almost everything

and

http://www.thatscaketome.blogspot.com where I can discuss my first love - cake baking and decorating. Feel free to visit them, sign up, post messages and visit any sponsors.

Sabrina"

We are sincerely saddened for losing such a strong and motivated advocate, someone who has passion and commitment and accomplished so much. F.A.C.E.S. was a pioneer advocacy organization and we were honored to have Sabrina as one of our directors. However we understand quite well the demands that her involvement required and the personal tolll that takes in being a patient advocate. We look forward to continuing to work with Sabrina on issues that are pertinent to our mission and we encourage you to visit her blogs. We wish her much success in her new endeavos and we remain excited to have her as one of our board members.

10.26.2007

Marly Silverman is profiled on Pro-Health e-newsletter.

To read the article written by Kristy Katzman

10.04.2007

P.A.N.D.O.R.A.'S board member Sabrina Johnson dazzles audience in Washington D.C.!

Sabrina Johnson, once again was one of the main guest speakers at The 2007 Minority Women’s Health Summit; Women of Color: Addressing Disparities, Affirming Resilience, and Developing Strategies for Success’ convened by The U. S. Health and Human Services Office on Minority Health and Office on Women's Health.

Ms. Johnson, the Founder and President of F.A.C.E.S.- Fibromyalgia Association Created for Education and Self-Help, Inc. was invited to participate in this special event addressing health issues, challenges and disparities experienced by women of color in the United States. The title of her presentation was "Fibromyalgia, Chronic Fatigue Syndrome, and Pain Management Disparities faced by Women of Color and disabled Law Enforcement Officers". The event was held on August 23-27, 2007 in Washington DC.

P.A.N.D.O.R.A. is proud to have Ms. Johnson as one of our dedicated board members and if you wish to contact her to discuss issues that affect our community and more specifically in the African-American community please visit her web site at www.fibrocop.org.

Click here for the press release from F.A.C.E.S

Click here for the unique fund raising efforts from F.A.C.E.S.

 

9.20.2007

Richard Payey, who was in prison for a conviction on drug traficking and drug possession, receives a pardon from Florida Governor Charlie Crist and will be released from prison immediately.

to read Richar Paye's story that finally had a good ending.

Our sincere gratitude to the Pain Relief Network who helped with the efforts to release Richard Paye. The American Pain Association and P.A.N.D.O.R.A. were among the many advocacy organizations that spread the word about Paye's ordeal and participated in a nationwide letter campaign to Florida Governor's Crist.

It is sad that a law that in principle intended to combat drug traficking instead allowed overzealous law enforcement agencies to charge a chronically ill patient with drug traficking causing greater financial, physical and emotional pain to Richard and to his family.  The irony also was found in the fac that Paye while in prison was being prescribed the same amount and a similar type of pain killer that caused him to be arrested, tried, convicted and sent to prison for a long time.

P.A.N.D.O.R.A. is grateful to our members who wrote letters to our Governor asking him to remedy this great injustice. Richard Paey is a chronically ill patient who was arrested, tried and convicted as drug trafficker under a Florida mandatory drug law that requires that personal possession of a certain amount of drugs, in this case, pain killers medically prescribed for his illnesses, be considered as if the individual had the intention to sell and to distribute.

Click here to read one of the many articles depicting his story

9.04.2007 

Dorothy Wall, author of Encounters with the Invisible, has a new article -The Right Name, the Right Strategy, the Right Time- published at the September 4, 2007 CFS/ME Pro-Health Newsletter detailing the reasons why a name change for CFS is in the horizon. She acknowledges comments by Marly Silverman, founder of P.A.N.D.O.R.A., by Dr. Lenny Jason, CFS/ME researcher at DePaul University & VP of the IACFS/ME professional organization, and Cort Johnson, publisher of the Phoenix Rising, CFS/ME newsletter.

8.20.2007

HAPPY ANNIVERSARY TO THE CFIDS ASSOCIATION!

The Summer Quarterly Publication of the CFIDS Chronicle, published by the CFIDS Associaton, under the Profiles Feature- Organizations Making History - by CFIDS Association Staff Contributors. The article celebrates its 20th anniversary by highlighting the many other organizations making a difference in teh lives of people with CFS and related illnesses.

You will find quotes from several hard-core patient advocates in our community among them: Mike Munoz, president of Rocky Mountain CFIDS/FMS Association, Ken Casanova, president Mass CFIDS Association, Dr. Lucinda Bateman, founder of OFFER, Ray Coliton, Manager of Co-Cure, John Herd, winner of the P.A.N.D.O.R.A. Sand Castles Awards for Outstanding Male Advocate of 2007, and Rich Carson, from Pro-Health, one of our wonderful benefactors.

Marly Silverman, the founder of P.A.N.D.O.R.A. was also quoted in the article - "Empowerment, respect, dignity and safety, - the life net to a very unkind world that doesn't embrace CFS and other neuroendocrineimmune disorders in the way it should. That's what organizations like ours provide"

This is an issue that you don't want to miss it!

07.13.2007

P.A.N.D.O.R.A., Inc- Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy Announces
OUR EDITORIAL TITLED  CHRONIC FATIGUE SYNDROME FUNDING SHOULD BE INCREASED   IS PUBLISHED IN THE SOUTH FLORIDA SUN-SENTINEL, ONE OF THE LARGEST NEWSPAPERS IN FLORIDA, ON JULY 12, 2007.

 

Click here to download long version.

One of our special 2007 Advocate Extraordinaire!© – Sandi Lanford, who was also the lucky winner of the AirTrain airlines tickets donated to P.A.N.D.O.R.A. during the IACFS Conference in January 2007,  was featured in the Tallahassee Democrat, on June 4, 2007. The newspaper is located in Tallahassee, Florida. We are proud of Sandi’s statewide efforts on behalf of Lyme disease sufferers and her advocacy work has led her to founding a non profit organization – The Lanford Foundation - Lifelyme, Inc. -  dedicated to create awareness for Lyme disease in Florida and beyond.

Click here for to read the article - http://www.tallahassee.com/apps/pbcs.dll/article?AID=2007706040311

Click here for lymeblog.com - http://lymeblog.com/modules.php?name=News&file=article&sid=1023

 

NEW!

University of Miami Medicine, The magazine of the Leonard M. Miller School of Medicine highlights in their Spring 2007 Issue, the incredible work of Dr. Nancy Klimas, one of our distinguished members of our medical advisory board.

This amazing article was written by Jeanne Antol Krull with photos by John Zillioux of Bonnie Mayer, one of our 2007 Advocates Extraordinaire!©. 

The CFS patient featured in this article is Bonnie Mayer, a PANDORA member, and a CFS patient advocate who for many years led the Miami CFIDS group in Florida. Mayer's pictures are quite poignant and so is her story. Mayer, a former nurse who at the age 45 who one night went to bed "feeling well and happy", only to wake up feeling extremely ill finally received the CFS diagnosis after 6 months of going from doctor to doctor searching for answers and a cure.

Krull, the writer of this piece, describes with great detail, the incredible research work that Dr. Klimas and her colleagues at the University of Miami are now doing with additional grants from the NIH, that will surely enhance the few scientific strides that have recently generate hope for CFS patients around the world.  Dr. Nancy Klimas is also the current president of the International Association for Chronic Fatigue Syndrome, a member of the CFS Advisory Committee and a member of the medical advisory board for P.A.N.D.O.R.A.

Click here to read the complete article

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05.12.07

Proclamation Day Letters in Florida for Neuroendocrineimmune Disorders.

Are you aware that both the mayor of Broward County and the Governor of Florida have designated May 2007 as Multiple Chemical Sensitivities (MCS) Awareness Month? Review these two proclamations. Proclamation 1. Proclamation 2.

PANDORA Press Release on Fibromyalgia Awareness Event organized by Yvette Taylor, our Editor. She is pictured below with Mayor Abrams who issued a special day for fibromyalgia in Boca Raton, Florida.

PANDORA Fibromyalgia Proclamation Day by the Mayor of Boca Raton

Fibromyalgia (FM) is a complex chronic pain illness that is recognized by the American Medical Association, the National Institutes of Health, and the American College of Rheumatology. FM experts estimate that at least 8 to 10 million Americans and approximately 5% of the population worldwide suffer with this disorder. For those with severe symptoms, FM can be extremely debilitating and interfere with even routine daily activities.


Marly Silverman, founder of PANDORA, wrote an article titled "Marly's Story- The Importance of Advocacy for CFS" and it has been published in the current April-May-June newsletter of To Your Health, Inc (TyH) . TyH is a recognized leader in quality supplements for fibromyalgia and chronic fatigue syndrome, along with support for arthritis and chronic pain. You can get the newsletter free of charge with a $25 order from To Your Health products. One of their products that Marly has used sucessfully is Fibro-Care. It compliments her sleep hygiene.

Click here to read Marly's article.

April 20, 2007

Tune in to South Florida Radio Personality Ron St. John, on weekdays from 2:00 pm to 7:00 pm and on Saturdays from 10:00 am to 2:00 pm on Majic 102.7 FM , to hear P.A.N.D.O.R.A.'s public service announcement about upcoming awareness day events in South Florida.

April 2, 2007
Article titled Some Doctors, Friends, Relatives Dismiss Sickness, published on April 2, 2007 by The Ledger.com by Gary White on CFS, FM, and Lupus and on the challenges patients and physicians face when dealing with these illnesses. - Click to Read Article

April 2, 2007
Gulf War Veterans' Time Leaves Lasting Impact on Their Health. Read the article.

April 2007
International Fibromyalgia Awareness Day Event in Florida -  May 6, 2007
Click to read more

Miami Living Magazine Article - Champion for Change
Dr. Nancy Klimas keeps hope alive for sufferers of Chronic Fatigue Syndrome, this article was written by Marla Schwartz who is a contributing writer for P.A.N.D.O.R.A.
Read more

P.A.N.D.O.R.A.’s Advocates Extraordinaire Ellen Nadeau, a 15 year old suffering with CFS and her mother Pam Nadeau who attended the were interviewed by NBC 6 in Fort Lauderdale on Jan 11, 2007 and the interview was also broadcasted by WNDU, local NBC affiliate in South Bend, Indiana, “Maureen’s Medical Moments”
Click to read more

February 2007
Purdue Pain Advocacy Community Newsletter features article about PANDORA written by Kimberley Tiller, RN, MPH, page 13, under 'PAIN COMMUNITY CONNECTION". Read it here.

January 11, 2007
'Give Me Your Tired,' Conference Invites Chronic Fatigue Patients, Doctors Looking For Answers - Interview with Rebecca Artman. Click to read more

January 9, 2007
Chronic Fatigue
Try to imagine for a moment how frustrating it is to be so tired that you can't perform normal daily tasks. It's called chronic fatigue syndrome, a condition that is not only difficult to diagnose but for which there is currently no cure. The 8th Annual International Conference on Chronic Fatigue Syndrome, Fibromayalgia and other related illnesses takes place Jan. 10-14 at the Bahia Mar Beach Resort in Fort Lauderdale. For more information, visit the International Association for Chronic Fatigue Syndrome website at www.aacfs.org.

November 29, 2006

The Olympian, the local main newspaper in Olympia, Washington published the article originally published by the Sun-Sentinel in South Florida, written by Nancy McVicar, featuring Marly Silverman, P.A.N.D.O.R.A. and Nancy Klimas. MD. Click here to read the entire article online titled: Research sheds light on Chronic Fatigue Syndrome.

Same article but titled "Once dismissed, chronic fatigue syndrome finally getting respect", was also published by the West Michigan-Grand Haven Tribune.

November 24, 2006

Red OrbitBreaking News - an online newspaper published Nancy McVicar's article click here to read it on their web site titled Chronic Fatigue Cases Finally Getting Respect: U.S. Campaign Raises Awareness

We were also informed that 34 other newspapers in the U.S., among them the San Jose Mercury, San Jose, California, have published the same article creating a huge awareness for CFS! We also found a web entry in a Chinese web site for Multiple Sclerosis, but the translation missed a few things but not the jest of what Marly Silverman shared about her experiences with CFS.

November 17, 2006
Read all about it in your neighborhood Sun-Sentinel paper!

If you live in Broward and Palm Beach counties, please keep your eyes open for the South Florida Sun-Sentinel newspaper special feature on CFS that will be published in the next 2-4 days, maybe even later.  The article is written by Nancy McVicar, the Sun-Sentinel, Health Writer and a winner of the Francis Devore Award for Public Service. The photographer is Robert Mayer, winner of several photography awards including the Best of Photo Journalism Award 2006.  Dr. Mary Anne Fletcher, Nancy Klimas, Irwin Auster and I, were interviewed and photographed for the article. To send a note of thanks to Nancy McVicar click here.

Click here to read media alert disseminated by the CFIDS Association.

On November 17, 2006, TELEMUNDO 51, one of the local Spanish stations serving the Hispanic community in South Florida and beyond, will broadcast a special on CFS at the "AL ROJO VIVO con Maria Celeste", from 5:00 pm to 6:00 pm. The show is broadcasted nationally in the US. " Es la revista noticiosa en español con mayor teleaudiencia en todo el contiente americano".  The show is broadcasted nationally in the US, but it can also be seen worldwide through cable in Europe, Middle East and the Scandinavian countries. This is an amazing opportunity to share with the world the plight of CFS individuals and their families, as well as the mission of P.A.N.D.O.R.A. The contact e-mail for the show is alrojovivo@nbcuni.com.

El Nuevo Herald

Click here for the El Nuevo Herald Front page article dated November 14, 2006  The article posted on their web site can be found by clicking hereDr. Nancy Klimas, current President of the International Association for Chronic Fatigue Syndrome and CFS researcher from the University of Miami, Marly Silverman, founder of P.A.N.D.O.R.A. and Rosa Berrocal, a CFS patient were interviewed for the article – “Un Mal que destruye la vida laboral” – The illness that destroys the "ability to work". (Translated literally “life of work” or “working life”.

Whether you speak Spanish or not, please send a warm e-mail to Alejandra Chaparro, thanking her for helping to create awareness for "SFC- Sindrome de Fatiga Cronica".  I want to thank Rosa Berrocal, one of P.A.N.D.O.R.A.'s members who was interviewed for this piece, for her contribution to the article, as well as the other members whose interview were not used for the article.

 

Click here for the outstanding interview of Dr. Nancy Klimas, a leading CFS researcher, current IACFS President and a director on our board, by Diana Gonzalez, from South Florida NBC6, aired on November 2, 2006 and posted on NBC (corporate) on November 3, 2006. This interview was shown before the NBC Nightly News anchored by Brian Williams reported on the CFS story by Robert Bazel Click here.

CDC unveils national awareness educational program on Chronic Fatigue Syndrome

Click here for the Press Release announcing P.A.N.D.O.R.A. International Advocacy Video Contest.

Click here to see the Los Angeles Magazine Cares community advertisement highlighting P.A.N.D.O.R.A. on their November 2006 issue.

Click here for the 2007 Advocates Extraordinaire!© and the 2007 Sand Castles Awards flyer advertisement for P.A.N.D.O.R.A.

I am pleased to invite you to click here for the outstanding interview Dr. Nancy Klimas, a leading CFS researcher, current IACFS President and a director on our board, gave to Diana Gonzalez, from South Florida NBC6, aired on November 2, 2006 and posted on NBC (corporate) on November 3, 2006. This interview was shown before the National News.

Many of you have seen the November 2, NBC Nightly News Brian Williams broadcasted the piece by Robert Bazell. If not click here.

There has been great media exposure for CFS nationally and this is the prime time for local organizations to take advantage of the national educational awareness campaign by the CDC.

If you are a patient advocate who lives in an area where there is not a state organization, you can still contact the local media and introduce yourself as a resource to discuss the issues affecting CFS patients. Local tv stations, local newspapers and community newspapers are always interested in sharing the "local angle" of a national issue. You can write to the editor of the newspapers, to the local magazines as well. This is a great opportunity for everyone to be part of the national awareness campaign.  If you need additional information on this issue, please e-mail us.

Ron St. John, radio personality from Majic 102.7 FM, on September 22, interviewed Dr. Nancy Klimas and I for a community broadcast about our advocacy efforts, the IACFS conference and the scientific research of Dr. Klimas. We will be giving away the audio CD recording of the interview. Ron St. John will also be a guest speaker at the Media Panel presentation

Click here for the NFA Fibromyalgia Newsletter -Vol. 6, No.5 - In The Spotlight, Q & A with Marly Silverman, by Elizabeth Deffner - Pick up some advocacy tips from the founder of P.A.N.D.O.R.A., the Patient Alliance for Neuroendocrinemmune Disorders Organization for Research and Advocacy.

Dr. Nancy Klimas, Bonnie Mayer and Marly Silverman, on April 3, 2006, from 1:00 pm to 2:00 pm participated in a live interview with Joseph Cooper, the host of Topical Currents, a locally produced public affairs interview talk/program that focuses primarily on South Florida issues. The topic was Neuroendocrineimmune Disorders. Topical Currents is an award winning radio program in Florida. WLRN, 91.3 FM, is South Florida's preeminent public radio station reaching a weekly audience of over 300,000 with a mix of news, talk and information. WLRN is licensed to the School Board of Miami-Dade County, Florida and can be heard from Palm Beach to Key West. It is ranked number one in the state of Florida among National Public Radio Stations. Additionally, WLRN provides one of the country's largest Radio Reading Services - providing a 24-hour, seven day service to South Florida's visually impaired community. We still have a few audio CDs of the taped interview. Please contact Marly Silverman.

Click here to read the article "From Survivor to Thriver" published on February 2005 CFIDS Chronicle.

Click here to read an article written by P.A.N.D.O.R.A.'s founder Marly (Marla McKibben) Silverman on Balance Magazine 2004 Winter issue.

Pediatric Pennies - Click here for the press release

Press Release for the "Inspiring Hope Through Awareness" Conference on May 14, 2004. Click Here

Other sightings:

Click here for the Yahoo Posting.

NPR reported on Friday mid day a report on the announcement of the CDC Campaign.

Update: Unfortunately CBS did not broadcast the segment on CFS. But keep an eye on your local and national media and report these sightings to me so we can share with our community.

Click here for more media information that is being disseminated nationally.

 

 

 

 

 

 

 

 

 

 

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