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WELCOME TO PANDORA'S

Lobby Day and Awareness Activities in Washington, DC! 

Join PANDORA, Inc. in Washington DC to advocate for patients with NeuroEndocrineImmune diseases, including: 

• ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome)
• Fibromyalgia
• Gulf War illness
• Multiple chemical sensitivity
• Chronic Lyme disease 

There are several activities taking place from May 10-12.  Choose to participate in as many as you are able!  Click on the "sign up now" button to let us know how you'd like to be involved.  PANDORA will follow up with registered participants.

Tuesday, May 10, 2011, 9 a.m. to 5 p.m & 

Wednesday, May 11, 9 a.m. to 4:30 p.m

Bi-annual Meeting of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) at the U.S. Department of Health and Human Services       

• Attend this important meeting with fellow PANDORA advocates and submit written or oral testimony to inform Committee members how they can help patients with ME/CFS.  The Committee provides advice and recommendations to the US Secretary of Health and Human Services on issues related to ME/CFS.
• IF YOU ARE INTERESTED IN TESTIFYING, you must email the Committee directly to arrange this at cfsac@hhs.gov  ASAP as time slots are limited and filling up fast.  Please see more details on the CFSAC website and our Facebook event page.  After you email the Committee, sign up to participate with the PANDORA group (click on the "Sign Up" button on this page) and we will contact you. 
• If you can't be there, you may email the Committee to arrange giving testimony over the phone during the meeting, or submit video testimony to be played at the meeting.  Written testimony can also be submitted in person or be mailed for inclusion in the meeting record.  See the CFSAC website for details.
• May 11, 2011: Participate in the Speak Up About ME program for children and teens with ME/CFS. This event aims to bring together a record number of young people and their families at the 2011 CFSAC meeting. Testimony time slots are very limited - request yours now!  
• Whether you can come to DC or not, if you have experience submitting testimony, please consider being a mentor to a young person or novice participant.  Sharing your experience and support to others will help build our community of advocates!  Contact Michelle Lonchar to volunteer as a mentor (mlonchar@pandoranet.info).

Wednesday, May 11, 2011:  9:00 a.m. - 4:30 p.m.

 “Speak up about M.E." Lobby Day for

Children and Teens with ME/CFS

• At the U.S. Capitol, we will work in teams meeting with elected officials and their staff. No one will lobby alone. Lobby teams will arrive for each appointment, deliver a packet of materials, and talk about how Congress can help.
• A training webinar and in-person support will be provided by PANDORA.
• Pre-scheduled appointments with representatives in Congress will be arranged.
• Please sign up for this activity soon (preferably by April 13th to give time for scheduling appointments.)
• If you have experience in lobby day activities, please consider volunteering to be a mentor to a young person or novice participant!
• For details, see www.speakupaboutme.org.

NEI Diseases Issues Briefing and Advocacy & Messages Training at the Hilton Garden Inn, Washington, DC 20002, (Time TBD)

• Issues briefing will be led by PANDORA founder, Marla Silverman and Mike Munoz, Executive Director of the Rocky Mountain CFS / ME & FM Association
• Training will be led by Michelle Lonchar, MSW, PANDORA, Inc. Advocacy Coordinator
• Participation in the training session is required for everyone joining us at lobby day.  If you can not attend in person, you may complete the training online.
• Please sign up soon to ensure we have enough materials and seats available.

Thursday, May 12, 2011:

NEI Diseases Lobby Day, Washington DC (Time TBD)

• Pre-scheduled appointments will be set by PANDORA with your representatives in Congress.
• Please sign up for this activity soon (preferably by April 13th) to give time for scheduling appointments. 
• At the U.S. Capitol, we will work in teams, meeting with elected officials and their staff. No one will lobby alone.  Lobby teams will arrive for each appointment, deliver information, talk about NEI diseases, the need for research and awareness, and how Congress can help.
• Participation in the training session either online or in person is required to participate with the PANDORA group in DC. Please sign up on this page and PANDORA will contact you.
• Lobby day activities run from approximately 9-5 with breaks.  

Hors d'oeuvres at the Todd Gray Watershed Restaurant, Hilton Garden Inn Washington DC/US Capitol (Time TBD)

• When we return from Capitol Hill, we will gather to discuss and celebrate our success!

Virtual Lobby Day at Your Home, All Month Long! 

 Coming Soon!  NEI Diseases Awareness Activities Tool Kit

• On May 1st, PANDORA will feature a tool kit on our website including suggested activities you can do from home to inform decision makers and increase public and professional awareness about NEI diseases.  All the information and instructions will be there to make participating from home as easy as possible!  The kit will feature tools to help you connect with decision makers on national, state and local levels.  Please sign up for PANDORA's emailing list to be notified of additional activities.

BRUTAL REALITY TO MILLIONS OF

AMERICANS

Neuroendocrineimmune Disorders are a brutal reality to now millions of Americans and millions worldwide. But we can change that with your generous donation. Help us to continue our mission by creating change within communities across the country and worldwide. Help us to save an individual, and his or her family from NEIDs' devastating effects. Make a donation today. Click on the Google Donate Button below and make a difference!

It is estimated that 20 MILLION AMERICANS are stricken by Neuroendocrineimmune Disorders. Worldwide the estimates can be staggering. Recently a demographics expert suggested that between 23-28 million individuals are now suffering with Chronic Fatigue Syndrome or ME worldwide. Despite of these high numbers, our single voices have no impact. We are yet to estimate the total financial, social and demographics impact of all the illnesses that we embrace in our mission. But we are working on it.

CALL TO ACTION!

We also ask you to participate in these worthwhile advocacy efforts:

You wrote us and we took action! We now have the Facebook sister petition on Change.org for our members and supporters who are not on Facebook. Click here to send an urgent message to U.S. Secretary Kathleen Sebelius of the urgency for funding for Centers of Excellence for CFS- ME and other NEIDs.

Press Release dated Aug 25, 2010 - P.A.N.D.O.R.A. Urges Swift Actionby U.S. Health Agencies to Improve Quality of Life for CFS

Patients. Click here for the PDF of the above press release.

Our Facebook on Causes Petition to U.S. Secretary of Health Kathleen Sebelius now has 1,834  signatures! Take ownership of your future.

Sign this petition today.

You can also find P.A.N.D.O.R.A.'s petition addressed to the U.S. Secretary of Health on American Express Members Project-TAKE PART.COM i

P.A.N.D.O.R.A. is a recipient of a Google Grant

Award.

The Google Grants program supports organizations sharing Google's philosophy of community service to help the world in areas such as science and technology, education, global public health, the environment, youth advocacy, and the arts.

Designed for 501(c)(3) non-profit organizations, Google Grants is a unique in-kind advertising program harnessing the power of Google AdWords advertising product. Google Grants has awarded AdWords advertising to hundreds of non-profit groups whose missions range from animal welfare to literacy, from supporting homeless children to promoting HIV education.

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