Vote for PANDORA on Citgo 2011 Fueling for Good Program
|Vote today and daily until |
August 11, 2011
PANDORA could be one of
four charities who will win $5,000 gas cards. Vote today and daily until August 11, 2011. Let's show that our community has a strong empowering voice of and can create awareness for the plight of individuals stricken with CFS/ME, fibromyalgia, chronic Lyme disease, MCS/Environmental & Gulf War illnesses.
We appreciate your support!
PANDORA Founder featured in Miami Dade College Successful Alumni Ad Campaign
Marly Silverman, PANDORA founder and Miami Dade College alumni, was featured in an ad in the Miami Herald and El Nuevo Herald on Thursday, August 4 as part of the school's "Successful Alumni" ad campaign. The ad will also appear in the Wednesday, August 10 edition of Diario Las Americas.
"When I graduated from Miami Dade College it was such a milestone for me," said Silverman. "It has led me to great personal and professional opportunities. I am grateful, proud and honored to be able to highlight two organizations that mean so much to me: Miami Dade College and PANDORA."
August 17, 2011 deadline for Nominations for Appointment to the Chronic Fatigue Syndrome Advisory Committee
The Office of the Assistant Secretary for Health, Office on Women's Health, HHS, is seeking nominations of qualified candidates to be considered for appointment as a member of the Chronic Fatigue Syndrome Advisory Committee (CFSAC). CFSAC provides advice and recommendations to the Secretary of Health and Human Services, through the Assistant Secretary for Health, on a broad range of issues and topics related to chronic fatigue syndrome (CFS). The appointments of three Committee members are scheduled to end during the 2012 calendar year. Nominations of qualified candidates are being sought to fill these future vacancies. Nominations to be considered for appointment to the Committee must be received no later August 17, 2011, by 5 p.m. EDT.
All nominations should be mailed or delivered to:
Nancy C. Lee, M.D., Executive Secretary
Chronic Fatigue Syndrome Advisory Committee
c/o Office on Women's Health,
Department of Health and Human Services
200 Independence Avenue, SW., Room 712E
Washington, DC 20201.
No nominations will be accepted by e-mail. More information here
PANDORA to attend IAFCFSME Conference in Ottawa, Canada
As we have been asked about the recent International ME Consensus Criteria publication PANDORA would like to share that we are in the process of reading and evaluating this breakthrough publication in the ME/CFS and in the NeuroEndocrineImmune diseases (NEIDs) scientific community.
|Kenneth J. Friedman, PhD |
PANDORA board member, Dr. Kenneth J. Friedman will chair the session devoted to case definitions of International ME Consensus Criteria at the IAFCFS/ME Conference in Ottawa, Canada from September 22-25, "Translating Evidence Into Practice."
May 12 - Lobby Day and International Awareness Day for NEI Diseases
Meeting with office of Senator Barbara Mikulski - From left: Tanya Gamble, Marly Silverman, Chris Niestpski, Deborah Moldover, Health Legislative Aid, Michelle Lonchar, Advocacy Coordinator, PANDORA and James Mills.
Washington: Thirty five (35) advocates from 14 states gathered on May 12 for PANDORA Awareness and Lobby Day group in Washington D.C. The Advocates Extraordinaire attended, testified and supported others at the CFS Advisory Committee meeting on May 10th and 11th and visited their representatives in Congress on May 11th and May 12th. They also participated in the May 11th Speak Up About ME gathering that focused on pediatric cases of ME/CFS.
Marly Silverman provided testimony on behalf of PANDORA on May 10, 2011 at 11:45 am, and wore black to honor individuals who have died of the consequences of having ME/CFS and other NEI diseases.
Special thanks to Michelle Lonchar, PANDORA Advocacy Coordinator who worked hard getting us ready for Awareness Week and Lobby Day Activities at our nation's capital.
Youth Speak Up About ME - "It was definitely worth it!"
We all know that people with ME/CFS suffer greatly when they participate in events such as these, but as one parent said:
"... Jamie was badly crashed afterward (...we all paid a price for being there) and missed 3 more days of school. Monday night, still with terrible pain in his legs, I asked him if he regretted going to DC, knowing the price now.
He said, "NO! It was definitely worth it.""
To Jamie and the other Speak Up About ME participants, it was worth it:
- To raise awareness of the severity of ME/CFS and the limitations ME/CFS imposes on lives;
- To spend time with others who understand what they deal every day;
- To take action;
- To become empowered.
THANK YOU to everyone who helps us (including and not limited to
- Phoenix Rising
- The Rocky Mountain CFS/ME & FM Association
- The Vermont CFIDS Association
- The ME/CFS Worldwide Patient Alliance
- CFS Solutions of West MI
- CFOG (Chronic Fatigue Syndrome and Fibromyalgia Organization of Georgia)
- National ME/FM Action Network
- Wisconsin ME/CFS Association
- Coalition 4 ME/CFS
The numerous individuals who generously give of their time, expertise, support, ideas, and who help Speak Up About ME be the success that it is "Speak Up About ME!" In doing so, you help young people with ME/CFS become Invisible No More!
|P.A.N.D.O.R.A., Coalition 4 ME/CFS, Coalition 4 Fibromyalgia, Applaud IOM Pain Report|
WASHINGTON, DC - June 29, 2011 - "As organizations representing millions of Americans who suffer from chronic pain, of health professionals who care for these Americans, and of researchers and educators working to improve the care and treatment options available to these Americans, we are united in our enthusiasm for the Institute of Medicine's (IOM) attention to this issue and by the release of this landmark report that identifies pain as a major public health problem."
PANDORA was among the national organizations listed in the press release which signed off on the IOM report on the day that it was released.
Organizations Announce formation of the Coalition 4 Fibromyalgia
Coral Gables, FL--- June 13, 2011---NeuroEndocrineImmune Disease (NEIDs) organizations have formed the second phase of the Coalition network to serve their patient community and change public policy. The Coalition 4 Fibromyalgia mission is to present a unified voice with common goals and objectives that will improve the quality of life for fibromyalgia (FM) patients and their families. This professional collaboration will strengthen its member organizations, promote resource-sharing, encourage networking and provide leadership training. Read more
|New Advocacy Group in Belgium|
Frank Op DeBeek reported that they have now formed a new organization in Belgium to raise awareness for ME/CFS. Wake-up Call Movement: ME / CFS & Fibromyalgia Action Group (Welkom Wake Up Call Beweging from Belgium). The founders are committed to the political management and revitalization of CFS/FM disorders using wake-up calls.
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™