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Justin Reilly

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Whittemore Peterson Institute
February 2, 2011

Just a couple of years after its founding, WPI is the clear world leader in the science of neuro-immune diseases including ME. They were founded with a $5M donation from the Whittemore family, whose daughter Andrea suffers from ME. They do incredible high-level science, collaborating on studies with NCI and Cleveland Clinic. Their work has been also been confirmed by NIH, FDA, Harvard and Cornell Med Schools.

Unfortunately, NIH has not granted WPI any money, so it must rely on patient donations. PLEASE SUPPORT WPI any way you can including financially!

The Great!

I've personally experienced the results of this organization in...

being positively impacted by WPI's work, like every pwME.

Ways to make it better...

If I had to make changes to this organization, I would...

get them a lot more funding.!

MY ROLE:
Professional with expertise in this field & I am a lawyer with ME and have closely followed WPI's science.

Review from Guidestar
PATIENT ALLIANCE NEUROENDOCRINEIMMU DISORDERS ORG FOR RESECH & ADV INC
February 2, 2011

PANDORA rocks hard! They do a lot with a limited budget. Noone takes any salary. PANDORA lobbies in DC and state capitols- successfully. One nei disease center has been set up in NJ. They are working on one in FL. They fundraise in the general population- walk a thons etc- make grants for research. Their brand of advocacy is effective and ME patients are in dire need of it. PLEASE SUPPORT PANDORA ANY WAY YOU CAN! Thank you!

The Great!

I've personally experienced the results of this organization in...

Increase research and clinical activity on ME around the USA.

Ways to make it better...

If I had to make changes to this organization, I would...

Make it bigger! Please help with your financial and other support!

MY ROLE:
Professional with expertise in this field & I am a lawyer with ME who is involved in advocacy (not involved with PANDORA).

Review from Guidestar
The CFIDS Association of America, Inc.
January 30, 2011

ME/CFIDS is a devastating neuro-immune disease. ME is a disease that desperately needs funding more than almost any other. Unfortunately CAA, one of the two largest ME orgs in the US, has failed patients and thus is not the org to which one should donate.



PLEASE DO DONATE TO AN EFFECTIVE ME ORG! I strongly suggest the Whittemore Peterson Institute for Neuro-Immune Disease
wpinstitute.org
or PANDORA
pandoranet.info
both of which enjoy very strong support from patients.



CDC, NIH and the UK govt have waged a quarter century war on ME science and patients and CAA has done much too little to bring this to the public's, lawmakers', or even pwMEs' attention, thus indirectly contributing to our persecution.



CEO Kim McCleary receives exorbitant compensation.



There is heavy criticism of CAA by patients. For example, see comments to the following blog post on patient forum Phoenix Rising:
http://forums.aboutmecfs.org/content.php?348-CFIDS-Association-Interview-with-Jennifer-Spotila-cfs-me-cfs-phoenix-rising

The Great!

I've personally experienced the results of this organization in...

being persecuted like every other person with ME, which CAA has done much too little to oppose.

Ways to make it better...

If I had to make changes to this organization, I would...

make CAA advocate effectively for pwME

MY ROLE:
Professional with expertise in this field & I am a lawyer with ME/CFIDS who is involved in advocacy including dealing with CAA.