Permanent Forum Member Slot on the PR Board of Directors - Nominations Requested

The Forums are a major part of Phoenix Rising. In recognition of this we have allotted a permanent space on the Phoenix Rising Board of Directors to be filled by a Forum member. Depending on how many nominations come in we will hold a vote; and the top three nominees will go to the Board and one person will be chosen.

The Forum Board Members main job will be to guide and assist Phoenix Rising in its core mission - to enhance the health of people with ME/CFS. A secondary objective will be to provide feedback back and forth from the Forums to the Board and vice versa when appropriate. The Board meets via teleconference calls at least four times a year, receives monthly reports on PR, and is engaged on variety of issues.

No specific hours are required although we are looking for someone whos energetic and healthy enough to participate on an ongoing basis. The Forum Board member does not have to have CFS, caregivers or supporters are welcome as well. Specific skills are not required but we will keep an eye open to fill some of PRs skill needs as well.

You can nominate someone else or yourself. If youre interested or think you might be interested please contact us at phoenixcfs@gmail.com

Current Board Members

[FONT=&quot]Mark Berry[/FONT][FONT=&quot] - BSc Mathematics (University of Manchester), MSc Computer Science (University of Birmingham).[/FONT][FONT=&quot]

Mark has had ME/CFS - diagnosed as "Multiple Chemical Sensitivity" and an "ideopathic immune disorder" - for 15 years. He has managed to work part-time from home as a software engineer for most of that time, and currently 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 he's developing with Phoenix Rising 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 campaign and work together for a better understanding of ME/CFS, fair treatment by medical and statutory authorities, and a huge increase in the derisory levels of biomedical research funding for ME/CFS and other severe and idiopathic neuroimmune diseases.[/FONT]


[FONT=&quot]Adin Burroughs (Board Member) - Adin graduated from University of Central Florida in 1993. [/FONT][FONT=&quot]From 1994 to 2000 he was Chief Surveillance Mission, Weapons Air Director, Chief, Plans And Exercises, Chief and Operations Crew in the USAF. From 2000 to 2002, as a Senior Systems Engineer for Scientific Research Corporation, Adin provided technical engineering support to the USAFs Theatre Air Command and Control Simulations Facility. As a Program Manager for Northrop Grumman from 2002-2005 he lead soft/hardware teams in datalink/command and control markets. Adin first became ill with chronic fatigue syndrome in Judy, 2003 and stopped working in Oct. 2003. He is currently disabled. [/FONT]

[FONT=&quot]Christina Gombar[/FONT][FONT=&quot] has lived with CFIDS for twenty years. She brings nearly three decades of experience in journalism, public relations, financial marketing,and literary publication to the board of Phoenix Rising. Her focus will be on finding and delivering personal financial planning solutions to the chronically ill, and getting the organizations concerns into the news. This past July shecommented in the Society for Human Resource Management Journal on the Americans With Disabilities Act: http://www.shrm.org/hrdisciplines/Diversity/Articles/Pages/HastheADAMadeaDifference.aspx[/FONT]
[FONT=&quot] She published her CFIDS experience "In the Company of Ghosts" in the anthology, Illness and Grace, Terror and Transformation, (Wising Up Press, 2007.) It can be read on her website at: http://www.christinagombar.com/doc.php?doc=ghost&p=1 She is at work on a memoir, Breathing Under Water: Living With and Lying About Chronic Fatigue Syndrome.[/FONT]

[FONT=&quot]Christina Gombar has published in The Huffington Post, PsychologyToday.com, The London Review of Books, The New York Times, Working Woman and numerous literary journals and has won several awards. She is the author of a book, Great Women Writers, 1900-1950, and has been a New York Foundation for the Arts Fellow. She holds an M.A. in Creative Writing and English from the City University of New York and worked as volunteer organizer, featured speaker and panel moderator at the Ocean State Writers Conference held at The University of Rhode Island. T.V. appearances include the Food Network and AmericasTalking. She enjoys public speaking and lobbying for the Phoenix Rising cause.[/FONT]

[FONT=&quot]Cort Johnson (President/Board Member)- [/FONT][FONT=&quot]a BA in philosophy (LBSU) and a Masters in Environmental Sciences (SJSU). He has had chronic fatigue syndrome for over 30 years. He created the Phoenix Rising website in 2002, the Phoenix Rising Newsletter in 2005 and the Bringing the Heat blog in 2009. The Phoenix Rising website - one of the most information rich ME/CFS website - contains hundreds of pages of articles on chronic fatigue syndrome research, treatment and other issues. In 2009 he created the Phoenix Rising Forums which quickly became the most popular communication interface for people with CFS on the internet. He regularly attends and testifies before Federal Advisory Committee meetings on CFS and conferences on the subject. You can find his story here ([/FONT][FONT=&quot]http://aboutmecfs.org/Story/Cortsstory.aspx[/FONT][FONT=&quot] )
[/FONT]

Comments

It's great to meet the board this way. About how many hours per month or per week or day, etc. does it tend to require for a person to do a good job?
WarriorSeeksPeace
 
Good question....the number of hours board members spend on the job differ alot depending on what's going on and if they are involved in it or not. We are just starting out and someone could spend alot of time or not really....I would say at least an hour a week though (and hopefully more :)....)
 
Hi Hope, I thank you for your nomination. My problem is that I do not think I have the health/energy capacity Phoenix Rising deserves. I am always operating at close to my maximum capacity without inducing relapse.

Having said that, I fully support Phoenix Rising, and if my health permitted I would have put myself forward as a candidate. I respect what everyone behind Phoenix Rising is doing, patients have long needed an ideologically broad and open forum for discussion and dissemination of information.

I think many of the existing moderators are aware that I am happy to support Phoenix Rising in any capacity on a one-off basis, as needed. It is my capacity to do so on an ongoing basis that is the reason I do not put myself forward.

I am committed to ME advocacy in all its forms - even from those who I disagree with. Until we have effective solutions, all voices are welcome. Nobody knows for certain where our ultimate solutions will come from.

I am currently pursuing multiple treatments I have not tried before, the first of which appears to be helping. As my health increases, presuming it does, I intend to put more into advocacy.

We do need more who can contribute to Phoenix Rising's capacity though. If you have the health, interest and resources, please consider this option. It is not easy work but it is very worthwhile. As Phoenix Rising's size increases, the demands on the existing board members, moderators, etc, are going to increase. In order to keep a high standard of oversight and function, we need more from the community to contribute.

Bye
Alex

ps Just reading Cort's comments on work hours, I can easily put forward an hour a week to help PR. It is longer time frames that are in question, but this could change if my health continues to improve. I may yet apply for the position, it depends how my health develops.
 

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