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DrDaveOkie

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4 reviews

Review for Patient Alliance Neuroendocrineimmu Disorders Org For Research & Adv Inc, Traverse City, MI, USA

Rating: 5 stars  

In October 2014, 10 people, in a concerted effort, posted 1-star reviews of PANDORA Org. to try and influence our rating negatively. They were angry because once we had learned HHS had already contracted with the IOM for the ME/CFS study, we decided to work with HHS and the IOM to ensure the IOM panel had the best membership possible and was asking the right questions with the best instructions possible. Others wanted us to join them in trying to have the contract cancelled, but we believed our fallback position was essential.

As it turned out, the IOM panel, with over half the panel members being experts in ME/CFS, conducted a very thorough and honest review of ME/CFS (which they recommended renaming SEID) and provided very strong and favorable results. After some initial shock and backlash about the report, everyone saw the government actually start taking action by funding SEID research, taking renewed efforts to reinvigorate SED strategic planning, treatment plans, developing diagnostic criteria, and more. Now patient groups are enthused and hopeful for the first time in a long time.

PANDORA doesn't expect to get any credit for choosing the right path, now that it's apparent we did, but we would hope we've developed some credibility with the community of ME/CFS (SEID) advocacy groups that we do share common interests and do have some workable ideas and expertise working with government agencies. We hope they will give us some credit in the future as we help lead the way in bettering the lives of our patients through advocating for better funding, research, treatments, and solutions.

Role:  Board Member
 

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

Rating: 5 stars  

This organization is exceptional. It is attacking SEIDS (ME/CFS) by thinking big - big projects, big name researchers, and big money. The first $1M dollar study of the severely ill patients holds great promise for finding a biomarker or biomarkers - something desperately needed. Linda Tannenbaum is an excellent Director and talented fundraiser. She has shown she knows how to get things done. She has also done them quietly, without trying to make a name for herself like many others in the field have been trying to do. A little humility goes a long way with me. I will continue to donate and support this organization because of its great promise to the disease!

Role:  Donor
 

Review for Patient Alliance Neuroendocrineimmu Disorders Org For Research & Adv Inc, Traverse City, MI, USA

Rating: 5 stars  

PANDORA Org is an all-volunteer organization that operates with very little funding, yet does very big work on a national level. It advocates for patients with NEIDs (ME/CFS, Fibromyalgia, Chronic Lyme Disease, Gulf War Illness, Multiple Chemical Sensitivity, and more) to the HHS, FDA, NIH, IOM, VA, and all the alphabet soup that is our federal government. And it advocates successfully. It is well-respected by those government agencies who recognize the number of patients that PANDORA Org supports. We also have been very active working as partners with other ME/CFS, FM, Lyme, and GWI groups to collaborate on difficult challenges, bringing all our power to bear on these tough problems.

Beyond this national advocacy mission, PANDORA Org also does the little things that mean a lot to patients - supplying meals to those who are most ill or following a surgery, sending a quilt to those who need a hug or the warmth our group can provide, a gift of flowers and a card to our special friends when they need a lift.

We can't help everyone because we never have enough money or volunteers, but we do what we can. We have brought on some new board members and officers and are refocusing on strategic planning and fundraising so we can better support our community of patients and advocate with more direction, train more doctors and nurses, and do all the things we've wanted to do. With luck and help, we'll be able to serve our patients even better in the future!

Role:  Board Member
 

Review for Army Emergency Relief, Alexandria, VA, USA

Rating: 5 stars  

I spent many years in the Army leading soldiers. Whenever my soldiers needed assistance, when life's troubles had gotten them in financial situations they couldn't get out of, AER was the place I sent them. When the Commander and I supported their need, AER always did what they could to help with loans, grants, help from their lending lockers, referrals to other sources of support, or whatever. They never let a needy soldier down, though.

I donate to AER every year, and have kept that up ever since I retired. I strongly recommend this charity for anyone interested in donating money that gets right into the hands of soldiers and their families when they need it the most. Very little overhead funded by the charity itself - most is funded by the Army. It's a well-managed, strong, and secure fund that does exactly what it says it does.

Dr. Dave Hatfield
SGM, US Army (Retired)

How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

Role:  Client Served