|Welcome back, Rebecca!|
Rebeccca Artman, one of the founding board members of P.A.N.D.O.RA., has returned to our executive board as Vice President, Public Policy, after a four
year hiatus, during which time she served on the CFSAC (Chronic Fatigue Syndrome Advisory Committee)
. While serving in the CFSAC, Rebecca served as a community advisor to our board. We welcome Rebecca's expertise and experience as an international advocate and her passion for helping patient advocacy groups to work together in accomplishing common goals.
|NEI Center: Our mission statement|
The 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™.
|NEI Center Resolution Awaits Passage from NJ State Senate|
Resolution (SR) 133, encouraging the establishment of the first research center
in the state of New Jersey dedicated to understanding and treating chronic
neuroendocrineimmune (NEI) illnesses which includes Chronic Fatigue Syndrome
and Fibromyalgia, is currently awaiting passage in the New Jersey State Senate.
A similar resolution (AR 202) recently passed the New Jersey State Assembly.
by Senator Christopher "Kip"
Bateman and Senator Loretta Weinberg, SR 133
that an estimated 20 million American adults and children suffer with
NEIDs. The economic impact and loss of worker productivity in the United States
due to CFS/ME, alone, is estimated to be over $9 billion per year. Chronic illness represents 75% of all health care costs in the U.S.
contact the Senators and ask them to support SR 133:
Christopher "Kip" Bateman
36 East Main St.
Somerville, NJ 08876
|XMRV Update: CFS/ME & You|
Last October, a team of
researchers from the Whittemore-Peterson Institute in Reno, NV made worldwide
headlines when they reported a link between Chronic Fatigue Syndrome and the infectious gammaretrovirus or XMRV.
To help further educate our members and the community on this major breakthrough, P.A.N.D.O.R.A. sponsored a lecture and slide presentation by Dr Nancy Klimas: XMRV CFS/ME & You, a compelling and comprehensive review of the disease, the XMRV virus
discussed in detail and what lies ahead. Over 150 people attended the 2-hour event.
(click on image to view video)
|XMRV Lecture by Dr. David S. Bell|
Lori Lawhead, a member of the NEI Center team, helped organize a lecture in Batavia, NY on the XMRV retrovirus last December featuring David S. Bell, M.D., a leading expert and pioneer in treating Chronic Fatigue Syndrome.
The event generated positive media coverage, including The Journal Register and The Daily News.
Dr. Bell will be presenting a similar lecture in California on Friday, Jan. 15, presented by the Barborka Family:
"XMRV retrovirus and Chronic Fatigue Syndrome, ME
(Myalgic Encephalomyelitis), Fibromyalgia and aggressive prostate cancer"
January 15, 2010
6:30 pm -
9801 Newport Blvd.
Santa Ana, CA 92705
This lecture is free & open to the public - directions
|Feature Profile: Jessica Barto|
On October 10th, radio personality Dave Ryan at KDWB
in Minneapolis put a comment on his Twitter account stating "people with Fibromyalgia should be shot." Fibromyalgia
patient-turned-advocate Jessica Barto harnessed the power of social
media to respond when Ryan refused her repeated requests to recant or apologize for his remarks.
Jessica created a Cause page on Facebook - "Fibromyalgia Sufferers Against Dave Ryan" which got over 1,400 fans in just over 24 hours. Several fans, including Jen Reynolds of Tempe, AZ posted a video response on YouTube.
(click on image to watch video)
To be one strong voice for manyŠ . . .
- 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
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™
NEW MEETING LOCATION!
FT. Lauderdale Pompano Beach
Center for Independent Living of Broward
4800 N.State Road Bldg. F Suite 102
Lauderdale Lakes, Florida 33319
ALWAYS held the
2nd Tuesday of each
Next meeting: January 12, 2010. 1:30 pm-2:30 p.m 2:30 pm -3:00 pm
Click here for other S.Florida and nationwide support groups.
Agent for Change
DeLuca's passing should not be in vain. P.A.N.D.O.R.A. founder, Marly
Silverman gives her personal take on another great loss to our
community of suffering, in her blog "One Agent for Change."
Click on image to join the Facebook Fans Page
Don't Dump It! Donate It!
P.A.N.D.O.R.A. is going "Green"!
you ever wonder what to do with your old cell phones? How about
your ink toners and ink cartridges?
Through the assistance of Dade Recycling,
we are participating in a fundraiser recycling program that will benefit
our environment by reducing some of the excessive and toxic waste found
in our landfills.
Pro-Cleaners & Alterations
914 S. Pompano Parkway
P.A.N.D.O.R.A., Inc. (Business Office)
Circle, Suite 715
Center for Individual & Group Counseling
W. Palmetto Park Rd., Suite
Drop off Hours:
T, W, Th 10am-5pm