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Mark2END-MECFS

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6 reviews

Review for Solve Me Cfs Initiative Inc, Los Angeles, CA, USA

Rating: 5 stars  

My 24 year old son was straight A college student, perfect health, became ill in 2014, now very severely ill. Very little organized advocacy and non-profit R&D has occurred for ME-CFS, but Carol Head, Emily Taylor and others have done a very successful job of advocacy, including in front of congress, and fundraising to do starter research grants. SMCI, aka SolveCFS.org has done a stellar job of helping the #MillionsMissing with this #ForgottenPlague called ME (CFS). Hope you might donate to help those who have had little hope, since most never fully recover from ME/CFS. We donate annually and this is having an international impact for M.E. (Myalgic Encephalomyelitis)/CFS

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

Find ways to get them 10X more donations, to have an even larger impact, quicker for the 20 million seriously ill with ME/CFS, that has zero FDA approved definitive diagnostics or treatments.

Role:  Donor
 

Review for Simmaron Research Inc, Incline Vlg, NV, USA

Rating: 5 stars  

We greatly appreciate the decades of Dan Peterson's caring for patients with ME since large outbreak in Incline village in 1980's, and for doing key research for decades. Hope he can continue to transfer his wealth of medical knowledge to the next generation of specialists for M.E., Myalgic Encephalomyelitis, that affects over 1 million perhaps in US, since he is one of the few true experts who is both a clinician and researcher.

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

I would hope you could clone Dan Peterson!

Role:  Donor
 

Review for Solve Me Cfs Initiative Inc, Los Angeles, CA, USA

Rating: 5 stars  

Carol Head of Solve and Journalist Llewllyn King came to our home in San Ramon CA and filmed two segments about M.E., Myalgic Encephalomyelitis.

ME can be a severe illness, that has taken my healthy straight A Stanford student son, a 19 year old sophomore in Jan 2014, and converted him to a semicomatose bedridden 23 year old, unable to move, except fingers, cannot talk or eat, so on a feeding tube, cannot open eyes, tolerate any light or sounds. What were you doing at 23 years old. Solve and the CFS Chronicles help give hope, and seeking funding for R&D moneys to fund R&D to Cure M.E., and advocate for fair Federal funding of NIH $250M/yr for this illness, that is now at epidemic levels in US, more common than Zika, Ebola, West Nile, + Polio combined, yet grossly neglected at NIH for decades, and by the CDC that does not track this major illness affecting >1 million in US, 25% or which are severe = bedbound or housebond. See you tube about ME at: https://www.youtube.com/watch?v=7Ck9oWJilP0
Feel free to share widely.
Consider watching also Jen Brea's excellent 17 minute TED talk at:
https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose
Or seeing her new film Unrest in Theatres, then PBS in Jan 2018
https://www.unrest.film/

Role:  Donor
 

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

Rating: 5 stars  

My son To is 23 years old, bedbound, semicomatose, suffering from severely severe M.E., Myalgic Encephalomyelitis, aka CFS, that affects 17 million worldwide. Yet gross discrimination by HHS, NIH against 1-2 million ill in USA has led to paltry, inadequate funding for R&D, so no FDA approved diagnostics, 80% are not diagnosed, and no FDA approved treatments, so millions remain ill, typically lifelong, since most never recover fully. OMF has organized leading researchers internationally, sponsor meetings of the best minds for ME in the world, & seeks donations, support from foundations, philanthropists, individuals to help #MillionsMissing with this #ForgottenPlague. Please help end a "Total Eclipse of my Son" for last two years, where he is bedbound, unable to open eyes, so shades and total darkness - and help millions of others. OMF.NGO is sponsoring the leading research in the world for M.E.! This medical disease is one of the last great mysteries in medicine, & is worthy of a Nobel Prize for whoever can figure out this complex puzzle.

Role:  Donor
 

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

Rating: 5 stars  

OMF is raising funds to do leading edge research to find biomarkers, diagnostics, eventual treatments, cures, prevention for M.E., Myalgic Encephalomyelitis. Linda Tannenbaum is doing a superb job of leading this effort to cure over 1 million ill in US, perhaps 17,000,000 worldwide. She has met with experts and patients nationwide and even visited my 22 year son at our home last month, showing her true compassion. I focus my donations on OMF since it is a leading organization funding key patient R&D including the severe ME/CFS patient study that was started early this year (Feb 2016).

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

Find ways to get it tens of millions of philanthropic donations a year to fund even more R&D for M.E.!

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2016

Role:  Donor
 

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

Rating: 4 stars  

Open medicine is striving to do research to solve Mylalgic Encephalomyelitis, a severely debilitating disease that affect approx 1-2 million in US and perhaps 20 million worldwide, and related diseases. The NIH has done negligible funding for this neglected medical disease that leaves a quarter of those affected housebound or bedridden. UNBROKEN! The author of this movie and Seabiscuit, Laura Hillenbrand, has this disease and has heroically helped publicize this. I have donated to this since my son is affected and went from being successful Stanford student, to being stuck in a dark room 23 hours a day, barely able to think or talk for last year. He is unbroken, but 80% of sufferers are not even diagnosed since research for diagnostics is missing. End-MECFS.org needs your support, to make up for the discriminatory lack of funding for research to cure this, by Congress and NIH. This group has the top researchers at Stanford, Nobel prize winners involved, but needs your support.

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

Find ways to get Congress to sponsor bills that mandate that this disease no longer be neglected at Federal and NIH levels.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Quite well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2015

Role:  Volunteer