Board of Directors

Karen Luoto (Board Member) – Karen was a business owner and Project manager with over 18 years of experience in the Information Technology field, for various business industries across multiple platforms in both mainframe and client server architectures. “Project Manager Professional”, PMP certified for 9 years.  She has managed national projects, using international resources, some with over $50M budgets and multi-year timeframes, to meet requirements for business critical functionality while increasing productivity. She was voted into the Who’s Who in Women Entrepeneurs when she came down with ME/CFS in 2007 and had to quit working in 2008. She was semi-bedbound for 2 years and knows intimately what it requires just to stay alive.  She became a member of Phoenix Rising in 2010 and volunteered for helping with the administrative tasks necessary to run a non-profit. She was requested to help run the non-profit by Cort Johnson and the other board members.  When asked to be president and be on the board by Cort and the other members of the board, she accepted under the guidelines that the non-profit would continue to stay true to the mission of a non-profit using the public donations to maintain that mission.


Mark Berry (Board Member) – BSc Mathematics (University of Manchester), MSc Computer Science (University of Birmingham). Mark has had ME/CFS – diagnosed as “Multiple Chemical Sensitivity” and an “Idiopathic Immune Disorder” – for 15 years. He has managed to work part-time from home as a software engineer for most of that time, and now works as a Portal/Web Developer at the University of Nottingham. Mark is a moderator on the Phoenix Rising forums, and is excited about the potential of the software projects Phoenix Rising is developing to enable ME/CFS patients – as well as their organisations, charities, advocates, supporters, physicians and researchers – to meet, share, collaborate, communicate, document their illness and experience, and to campaign and work together for a better understanding of ME/CFS, fair treatment by medical and statutory authorities, and a huge increase in biomedical research funding for ME/CFS and other severe and idiopathic neuroimmune diseases.

 

Adin Burroughs (Board Member) — Adin came down with ME/CFS (PostViral Encephalitis with autonomic neuropathies) and Fibromyalgia in 2003 while on active duty with the USAF as a reservist (individual mobilization augmentee/IMA). Adin began volunteering with Phoenix Rising in 2009 in a technical role and has helped Phoenix Rising through multiple hardware and software platform changes through the ensuing years. Adin has a BSc in Computer Science (University of Central Florida) with professional experience in systems engineering, software and hardware development, and distributed realtime simulations.

5 comments

{ 5 comments… read them below or add one }

Michele Dubow July 17, 2012 at 1:15 am

Cort, I was diagnosed with CFS in 2008 and this is the first time I’ve gotten on the web and searched around for CFS support information from organizations and blogs. (Can you believe it?) I’m generally pleased with what I’m finding and feel the real potential to connect with others on this, perhaps because I have more space in my life to move into another phase of “coping” and acceptance. I do pretty well a good part of the time, but the recent heat and other factors triggered a setback, so I’m reconsidering what I need to do to get back to first principles of management. And I’m looking for more comaraderie and opportunities to make a difference for others. I’m considering starting my own blog or other writing/teaching/producing projects, which would be unique, for sure.

Anyway, I’m writing because I serendipitously found your site and read your bio and I MUST share that I also have a BA in Philosophy and a Masters in (in my case) Environmental Management and Policy from the UNC School of Public Health. And I live in Durham, NC! So I felt immediately compelled to make a connection. My background a long time ago included, among other things, a series of jobs in basic science research (molecular biology) and then almost 20 years at the EPA (in Durham and RTP) before resigning from employment for medical reasons. I’m a young, vibrant (much of the time), creative person who is determined to live a healthy, active life into way old age, current conditions notwithstanding.

Given how close you are, it would be meaningful for me to get to know you and your organization. I notice that the CFIDS organization is in Charlotte. Are we in a CFS hub? I have felt for a while that my life work may be in educating and inspiring people to prevent and cope with chronic degenerative illnesses — mainly Alzheimer’s, dementia, and Parkinson’s — and that expanded to perhaps include other autoimmune illnesses and now I’m realizing — duh! — I have personal qualifications to add CFS as well. (I’ve been a family caregiver for relatives with Alzheimer’s, Parkinson’s, and serious cardiovascular disease for about 13 years, I’m sure a major stressor that contributed to my CFS.) I am finally touching a toe in the water of what’s happening in the outside world on all this to see how I will connect. The last few years have been about taking care of family and myself, and opening my creative channels.

Enough for now. I have a feeling there’s much more to say. Thank you and I look forward to hearing from you.

Michele Dubow
mdubow@earthlink.net (don’t be scared off by the SPAM filter)

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C. Downey March 30, 2013 at 11:22 am

Hello,
I have been looking into connections between ME/CFS, hypercoaguable blood, and Antiphosphplipid Syndrome. Studies by the Hemex Lab propose that ME/CFS is a type of autoimmune reaction to specific proteins, which falls under the umbrella disease Antiphosphlipid Syndrome. People with this syndrome have hypercoaguable blood. It has been acknowledged by ME/CFS experts that ME/CFS people have hypercoaguable blood. ME/CFS people can have POTS; people with the autoimmune disease Lupus can have POTS; Lupus is linked to Antiphospholipid Syndrome. A Mayo Clinic study has indicated many cases of POTS may be autoimmune. Perhaps ME/CFS is autoimmune, and also falls under the Antiphospholipid Syndrome heading. The Hemex Lab has found that heparin may improve ME/CFS symptoms. This lab first discovered this effect on ME/CFS symptoms when treating women with multiple miscarriages with heparin; some of these women had ME/CFS-like symptoms that improved with the heparin treatment. I would welcome comments on this topic.
Thanks,
Regards,
C. Downey

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Mary Silvey, RN May 16, 2013 at 6:05 pm

Very encouraging to see, and finally feel that M.E. is going to be addressed and appropriately recognized. I do not understand how this issue fell out of the many recognized needs that have circulated the web. Perhaps all the pseudonyms caused more confusion for the newer patients? I saw no mention of CFIDS, and was curious why. There is record stating that M.E. actually was in the U.S. in 1935, where 198 patients fell at Los Angeles County Hospital, which no longer exists. Both the ICC and CCC will need revision, as there will be studies that will possibly need inclusion. I have had all these diagnosis, and fought for the recognition of M.E. since 1994, but we all were trying to stay within diagnosic parameters in the 90′s. Don’t forget fibro!! Mary Silvey, RN (Many thanks to Dr. Leonard Jason, for his continued work and open ear.)

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Piper October 9, 2013 at 10:52 pm

My partner and I stumbled over here different page and
thought I might check things out. I like what I see so now i am following you.
Look forward to going over your web page yet again.

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Max Banfield October 11, 2013 at 8:37 pm

Chronic fatigue syndrome has been a topic of heated arguments for over 100 years long before it was called CFS.
Until 1975 it was regarded as a mental illness, and since I started doing my own research it has become known as a physical disorder of some sort.
The process has involved many problems, but 2 in particular.
Firstly some of the people who previously argued that it was a mental disorder are hostile critics of my ideas
Secondly I have not been qualified in medicine, and my ideas have not been published in medical journals, so the publications in nurses journals, natural health magazines or my own books and website have been described as “not the real literature”, and that has given copyright thieves the opportunity to steal my ideas and methods and claim then to be their own.
My ideas and methods now dominate discussions about this topic.
Do you want me to send you any items.
P.S. When I walked into a meeting with Tony Sedgewick, head of the South Ausgtralian Institute for Fitness Research and Training in 1982, he knew within a half an hour that I could produce a world first study, and then I did.
http://users.sa.chariot.net.au/~posture/ChronicFatigueSyndrome.html#anchor130031
Best regards
Max Banfield

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