P.A.N.D.O.R.A. - Patient Alliance for Neuroendocrineimmune Disorders Organization for Research and Advocacy, Inc.

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P.A.N.D.O.R.A.'s & Lifelyme™ Newsletter
September 2010
September 2010
Virus News Causing Change

XMRVME/CFS patients and the news media gave much attention to the findings in the August 23 NIH and FDA study that found a family of murine leukemia viruses in 87% of patients. The atmosphere has changed as researchers have now taken great interest in this illness shown by the hundreds if international researchers who attended the XMRV conference on Sept. 7-8. Learn more about this study here.

In response, P.A.N.D.O.R.A. made a call for quick action. Read it here. Robert Miller, a long-time CFS patient, included this powerful statement with a petition that was delivered to government officials at the conference. Additionally, he delivered the P.A.N.D.O.R.A. petition calling for the U.S. Secretary of Health to meet with P.A.N.D.O.R.A. members about establishing the NEI Center.

Prohealth reports that nine patients and Dr. Dan Peterson of Nevada had a very frank discussion with with three top-level NIH officials about the past failings and future expectations.

Look for a P.A.N.D.O.R.A. summary of the Sept. 8 conference webinar.

Importantly, this news may also lead to improved treatment and recognition for not only ME/CFS patients, but also Gulf War Illness / EI suffers, fibromyalgia sufferers and Lyme disease sufferers. These illnesses often overlap and share many biological abnormalities. At least one researcher has contacted us to inform us he is studying a possible link between chronic Lyme disease and these retroviruses.

We are looking forward to researchers discovering what other illnesses are associated with high rates of these retroviruses.
Chase Community Giving Winnings Attracts Attention

A newspaper ad in the Florida Sun-Sentinel gave P.A.N.D.O.R.A. some welcomed attention. Thanks to the support of the NeuroEndocrineImmune disorder patient community, $20,000 will soon be forwarded to us to help us reach the ultimate goal, a better quality of life for these patients.

With such great success, we think there is more we can do. So....

Let's Do it Again!

This time, we also want to help other patient organizations.

American Express is currently offering $1 million split among five charities every three months, with the next voting period starting on Jan. 1, 2011. To be eligible, a non-profit organization must be nominated by many people and be approved by the TakePart Advisory Board. Go here to see their press release.

We want "Patient Alliance for NeurEndocrineImmune Disorders Organization for Research and Advocacy, Inc." and the "Whittemore Institute for NeuroImmune Disease" to be included in the next round. Please go here and nominate these two non-profit organizations using the complete name as you see above. The nomination process for each organization must be done separately.

This is an opportunity for you to nominate your favorite patient organization, also.

Remember, if P.A.N.D.O.R.A. wins some money, it will be used primarily for establishing the NEI Center™ to advance research and improve patient quality of life.

We can't pass up a chance at $200,000.

Ryde for Lyme
Lime BikeThe Lanford Foundation is coordinating with some Florida college girls for a bicycle ride October 16-17. The route will go from Gainesville to Tallahassee, Florida through the state's Nature Coast.

Spaghetti and some other food will be provided to participants. Lime-c
olored shirts will also be provided.

The money will go to help another young woman with Lyme disease who has struggled to pay daily living expenses as a result of her severe illness and lack of adequate health care.

Patients can be sponsors and offer donations to go directly to helping this woman. Go here for more information.
One Voice to End Pain

Bring your Voice
Megaphone girl
P.A.N.D.O.R.A. is supporting the American Pain Foundation and National Fibromyalgia Association efforts this month as September is Pain Awareness month.

"We're gathering a louder and bigger voice, more voices, and as they join together with the same message, I see that there is hope that something is going to change," said one of the patients in a video on the Foundation website. "We can't ignore all of these voices."

As you know, P.A.N.D.O.R.A. advocates that we speak with "one voice" as "one community" with "one message." We urge patients offer to help this effort through a survey on the APF website.
New Communications Director
You will be hearing from our new communications director, Tina Tidmore
Tina Tidmore

As of September 1, Tina Tidmore joined P.A.N.D.O.R.A. as the new Media and Communications Director. Tina has already increased our efficiency.

You will see more improvements, including a modernized website.

She brings us her 14 years of experience in the news media, including reporting and advertising. She also has 22 years of experience in sales. She will be working remotely, mostly from her home in Clay, Ala.

Already, she has increased awareness with an article in The Birmingham News with a few details of her personal experience with CFS.

CFSAC Charter Renewed

CFSAC is a committee reporting to the Department of Health and Human Services
Health Human Services Logo
Renewal of the Chronic Fatigue Syndrome Advisory Committee charter has been approved.

This committee makes recommendations to the assistant director of the Department of Health and Human Services. The issues they include are:
  • factors affecting access and care for persons with CFS;

  • the science and definition of CFS; and

  • broader public health, clinical, research and educational issues related to CFS.

At the time of publication, the details of the new charter have not been posted. Look for this information in a future newsletter.

NEI Center-Conceptual Rendering
Petition to U.S. Secretary of Health
NEI Causes petitionJoin P.A.N.D.O.R.A. in asking U.S. Secretary of Health & Human Services, Kathleen Sebelius to meet with P.A.N.D.O.R.A. to ensure her support for aggressive and substantial funding for the NEI Center(TM) and other similar facilities throughout the U.S.

Sign the petition...

NEI Center: Our mission statement

NEI logo 2010The NeuroEndocrineImmune (NEI) Center™ is a community patient-driven grass roots project of P.A.N.D.O.R.A, in partnership with the Lanford Foundation-Lifelyme, Inc.

It is the first research center to incorporate biomedical engineering scientific and clinical research, and integrating patient computer aided disease diagnosis and treatment (CADDT) specifically designed for multi-system illnesses and complex diseases.

To read the entire mission statement and for more information, go to P.A.N.D.O.R.A.'s Facebook Cause Page for the NeuroEndocrineImmune (NEI) Center™.
In This Issue
Virus News Causing Change
Ryde for Lyme
One Voice to End Pain
New Communications Director
CFSAC Charter Renewed
NEI Center: Our Mission Statement
Our Mission
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Agent for Change
Marly's Blog

Marly Silverman, Founder, P.A.N.D.O.R.A.
Mitch Pagerey Racing for P.A.N.D.O.R.A.
& NEI Center

Mitch pagerey car 3
Mitch Pagerey in car #89 with P.A.N.D.O.R.A. & NEI Center logos

Mitch Pagerey 3
Click here to see more photos of Mitch
Ryan is Home

Ryan Michael Baldwin with Dog

The Baldwin family still needs your help.
Click on the image to join the "Bringing Ryan Home" Facebook Cause Page

Don't Dump It!
te It!

Click here for more info

.O.R.A. is going "Green"!

Donate your old cell phones, ink toners and ink cartridges and proceeds will benefit P.A.N.D.O.R.A.

In Memoriam

in Memoriam

In memorium
Click on image to join the Facebook Fans Page
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eBay Giving Works
Buy or sell and donate to P.A.N.D.O.R.A
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NEI Center

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Contact Information

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P.A.N.D.O.R.A.'s Mission

To be one strong voice for many´┐Ż . . .
  • Creating and Raising Community Awareness
  • Advocating for Quality of Life Issues
  • Providing Support and Educational Resources
  • Establishing Partnerships in our worldwide community
  • Supporting Scientific Research
  • Encouraging Empowerment groups
  • Organizing Educational Medical & Patient Conferences

These goals will assist patients with neuroendocrineimmune disorders and their families in leading productive and fulfilling lives.

Built on Hope * Strong on Advocacy
Finding a Cure through Research

1 Voice - 1 Community - 1 Cause™