Celebrating 10 Years of Improving

Lives

ME/CFS

FibromyalgiaChronic Lyme

MCS / EIGulf

War

Ill

ness

One Voice, One Community,

One Cause™

PANDORA strives to alleviate the suffering caused by NEI

diseases through advocacy

and public, patient and physician education.

Thank you to our dedicated

board members!

PANDORApartners withorganizations, collaborates with academia, the biotech industry & health agencies.

The kick off for the program was at the 2007 PANDORA-sponsored IACFS/ME Conference in Fort Lauderdale, Florida.

Our Main Advocacy Project:The Advocates Extraordinaire™ Leadership Program has been successful since 2007.

It provides advocacy training so patients, caregivers and family members can effectively speak to government leaders, to the media and to the public.

Other PANDORA Projects:

• Empty Chair Project™• Pediatric Pennies™• I Need a Hero Project™• Quality of Life Project™• NEI Center™

PANDORA Provides Assistance to Other Projects:

• Speak Up About ME• MCWPA• Lymenaide• Bringing Ryan Home• Coalition 4 ME/CFS

PANDORA’s Grants

• Coastal Construction• Forest Laboratories• HHV-6 Foundation• Purdue Pharma

Some of our Micro Grants Given:• Nancy Klimas, MD-(UM)• Gordon Broderick, PhD• Vermont CFIDS Association• VA Foundation of So. Fla.• National Fibromyalgia Assoc.• John K Chia, MD• Michael H. Antoni, PhD • Fundación para la Fibromialgia y el Síndrome de Fatiga Crónica

Some Grants We Have Received:

• Pro-Health • Mark Iverson• Silverman, Oren & Mayer families.

PANDORA’s Position on ME/CFS and Government Policy

CDC:• NCHS-Follow your own policy and announce the director’s

decision on the Coalition 4 ME/CFS proposal to have CFS reclassified in the neurological chapter of the ICD-10-CM so it is aligned with the WHO ICD-10. As recommended at C&M ICD9-CM meeting in 2011, this change must be made before the ICD-10-CM is implemented.

• CFS Program - Support the Coalition 4 ME/CFS reclassification proposal and work with the ME/CFS scientific and patient advocacy community to change the name of the disease / illness.

• CFS Program - Continue to make changes in the CDC website as recommended by the CFSAC, researchers and clinicians, as well as the Coalition 4 ME/CFS and other patient advocacy organizations.

PANDORA’s Position on ME/CFS and Government Policy

NIH:• The now correctly-named ME/CFS

Special Emphasis Panel should announce their next meeting date and roster - or say when such announcement will be made. No information has been released since at least June 2011.

• Appropriate a fair share to ME/CFS research funding, as the prevalence, cost and personal impact demands. Raise it from being 220th out of 232 illnesses in funding. Make ME/CFS a priority.

• Send a “full court press” message that the NIH wants more ME/CFS researchers to apply for grants.

FDA:• Meet with

stakeholders about fast-tracking the ME/CFS treatment approval process.

Social Security:• Place severe

ME/CFS on the list of compassionate allowances.

AHRQ:• Educate doctors

Hope, the only Antidote.™T H A N K Y O U !

Check out our new website:

10 Years and Counting… Hooray!Our niche and our strength comes from our seeking

partnerships and collaborations and providing support to other organizations and individuals who are ready to make a difference. We look forward to continuing to work with you on improving the quality of life of ME/CFS patients.