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leelaplay

131 profile views
2 reviews

Review for Open Medicine Foundation, Agoura Hills, CA, USA

Rating: 5 stars  

I went from a highly active university professor to a slight step above bedbound within a few days of contracting ME. 15 years ago. NIH has underfunded the disease - about 2% of the funding for MS and Parkinsons and 0.5% of AIDS funding. This leaves us with no accepted biomarkers or treatments, though the work of experts is finding antivirals, immune modifiers, cancer treatments that work for some patients if they can be made available. Most patients, like me, however, are left to rot. And most medical schools either don't even cover ME or have wrong information. We need good biomedical research now to solve these problems and bring life back to 10s of thousands like me.

OMF is one of the good biomedical researchers. And one of the few that is looking to research the severe patients. I've participated in past studies and am so excited at the new study awaiting funding to study severe patients. The researchers and advisory board are stellar - nobel laureates, Stanford, Harvard...... And the planned study results could soon change the bleak picture people with ME face now.

Role:  Client Served
 

Review for New Jersey Chronic Fatigue Syndrome Association Inc. (NJCFSA), Florham Park, NJ, USA

Rating: 5 stars  

NJCFSA is one of the outstanding ME/CFS groups. On top of the outstanding services they provide to their area, they also reach the international community, for eg a wallet card on ME/CFS to use at ER. This helped me work with my anaesthesiologists to come up with an ME protocol that worked for me. Previous surgeries had left me no longer able to care for myself for months.

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

Provide them with more funds so they could increase their services.

Will you volunteer or donate to this organization?

Unsure

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2013

Role:  General Member of the Public