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Phoenix Rising Adds Two New Board Members

Mark Berry introduces the new President of Phoenix Rising, Dr. Gary Solomon, and welcomes Professor Jonathan Edwards to the Phoenix Rising Board of Directors.

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On behalf of the Phoenix Rising Board of Directors, I’m delighted to announce the appointment of two new board members. Regrettably, I also have to say goodbye to one.

Karen Luoto has stepped down as President.

I would like to express my profound gratitude to Karen for the vital work she has done in the last two years to stabilize and professionalize Phoenix Rising’s core administrative processes. I cannot stress enough what a crucial job this has been.

Karen can take great pride in the knowledge that she is already able to hand over the reins to Gary with confidence that the organization is in a stable and sustainable state from an administrative point of view. That is only possible now thanks to a lot of hard work by Karen.

Introducing our new President

Dr Gary Solomon

Dr. Gary Solomon

Karen’s replacement as President, Dr. Gary Solomon, is known to many of our members by his forum name, butydoc. He joined the Phoenix Rising forums as a patient seeking advice and information about ME/CFS, and I’m delighted that he has now agreed to serve as our President.

Gary is the founder and director of the Wound Healing Center and Chief of Surgery at Long Beach Memorial Hospital. He is retired from practice in 2012 due to his illness which developed in 2003 after a prolonged upper respiratory ailment.

He has been treated by Dr. Jose Montoya since 2007. Gary’s interest in Phoenix Rising is “strictly trying to give something back for the great work this site has provided over the years”.

Professor Jonathan Edwards joins the board

Professor Jonathan Edwards

Professor Jonathan Edwards

Our other new board member also joined Phoenix Rising as a forum member. Professor Jonathan Edwards has quickly become a well-known name to the ME/CFS community as the research strategy advisor on Invest in ME’s rituximab trial, and as a prolific and greatly appreciated poster on the Phoenix Rising forums.

Professor Edwards was responsible for introducing rituximab as a therapy for rheumatoid arthritis in 1998 and subsequently in other autoimmune rheumatic disorders. He has also worked on general mechanisms of autoimmunity.

Although he’s now in retirement and not personally involved in research, he has become interested in the challenge of finding “the biological mechanisms that underlie the CFS syndrome” – mechanisms that he believes are most likely “several different MEs.”

Professor Edwards now hopes to be “actively involved in promoting collaboration between scientists of different disciplines” and “interacting with people with ME/CFS directly through Phoenix Rising to make full use of the rich resource of personal experience, scientific knowledge and original ideas the ME community has to offer.”

Our two new board members obviously bring with them a wealth of knowledge, skills and experience that will be of enormous value to Phoenix Rising as we grow and develop as a non-profit organization serving the worldwide ME/CFS patient community.

Perhaps more importantly, they both have an evident appreciation of the value of the Phoenix Rising forum community, and a strong desire to use their skills and experience to do something positive for the ME/CFS world.

I feel confident that both of them will help Phoenix Rising to maintain and extend the services we deliver to our members, as well as preserving the principles and values that have made us what we are today.

 The rest of the board

Adin Burroughs

Adin Burroughs

The other two members of Phoenix Rising’s board of directors at present are myself and Adin Burroughs. Both Adin and I have been board members since Phoenix Rising was instituted as a US 501(c)(3) non-profit organization.

Adin has revolutionised Phoenix Rising’s technology platform in that time, leading innovations such as the move to XenForo for our forum software.

He’s been having to take more of a back-seat role lately, due to family and other personal commitments, but in my opinion it’s very important for the continuity of the board that Adin’s still around, and I’m glad — relieved, even! — to know that his technical and professional guidance remains available to us.

Mark Berry

Mark Berry

As for me, I joined as a forum member when the news broke about XMRV, and I’ve stayed around ever since. From the forums and from the community I’ve learned an enormous amount in the last few years about all manner of subjects related to ME/CFS. I’ve found help, advice and support on the forums which has helped me immensely as well.

I’ve also worked as a volunteer for Phoenix Rising in a variety of roles, first as a moderator, then as board member, moderation team lead, content team lead and now as Acting CEO. I’ve now agreed to also serve as both Secretary and Treasurer until we can find someone to fill those roles — which I do hope will be sooner rather than later!

Since I now somehow find myself holding at least 3 senior posts (hopefully, temporarily!), I’d like to offer a few thoughts on how I’d like to see us develop next as an organization, in terms of our board of directors in particular.

Wanted: Yet More Board Members!

I believe we now have a wonderful foundation for an excellent Board of Directors, but I certainly want us to build further on those foundations.

If we are to achieve all of the aims I would personally like to see this organization achieve — including a range of web-based projects to aid collaboration and information exchange within the ME/CFS world and a game-changing role in international ME/CFS advocacy — then it’s crucial that we must develop the Board further.

So to maximise the potential of what Phoenix Rising can become, we are going to need more board members, representing a wide range of perspectives and bringing a range of professional knowledge to the table.

I do believe it’s very important that the organization remain solidly patient-focused and patient-led, so we will always want more board members who have personal experience of ME/CFS (and forum members in particular). But I’d also like us to have good representation of carer and advocate perspectives.

As an international organization, I think it’s going to be of great value to us if we can achieve a spread of board members from across the world.

In terms of skills and experience, right now we are a bit short of legal and financial expertise.

Although our needs in those areas are small-scale and manageable for the time being, we could really use some help from volunteers with some experience (and ideally a relevant professional background) in book-keeping and 501(c)(3) non-profit administration – or even just an interest and a willingness to learn. There are plenty of opportunities here to learn these skills on the job!

Perhaps most importantly of all, I’m acutely aware that we have no women on the board right now. I’m in discussions with several excellent candidates and I’m very much hoping that a few of them will be joining the board soon.

So if you are interested in joining us on the Phoenix Rising Board, or if you know someone else who might be, please do contact me through a forum conversation or email me at mark@phoenixrising.me

Also Wanted: More Volunteers!

And while I’m on the subject, we’re still on the lookout for a range of volunteers to fill some key roles in Phoenix Rising’s work.

At the moment, we particularly need more writers and proof-readers, to share the load with our existing small team, and there’s a vacancy for a Content Team Lead to manage and develop the work of our wonderful writers.

We are probably soon going to need more people with IT project skills too, as we begin to focus more on development projects, and I’d love to find someone who’s able to take a lead in developing our social networking sites (Facebook, Twitter, YouTube, LinkedIn, Google+, etc).

So if your health and your life circumstances might allow you to offer us a few hours a week, please do get in touch. I continue to believe that what we are building here at Phoenix Rising is already something very special and innovative, which greatly enriches the life of the ME/CFS community worldwide.

I also continue to believe that we are still only scratching the surface of what we could become. We have a real opportunity here to achieve something great. So let’s get together and make it happen!

Sign the petition to get ME/CFS a research budget of $250 million a year!
There's a US petition and a global solidarity petition here with a long-term target of 50,000 signatures. Time we were on an equal per-patient funding basis with similar diseases!


 

{ 28 comments… add one }

  • Sasha October 6, 2014, 1:58 pm

    This is great news that we're gaining Dr Solomon and Prof. Edwards! We're very lucky to have them on the board.

    Thanks to Karen for all her behind-the-scenes work and to you and Adin for all you've done for us over the past couple of years, and continue to do.

    @Jonathan Edwards, @Butydoc, do you have anything in particular that you're hoping to achieve by joining the PR board?

  • rosie26 October 6, 2014, 2:21 pm

    Wow, exciting times. Things are getting better and better. Thanks.

  • Sasha October 6, 2014, 2:52 pm

    I think it's hard to overstate the value of having doctors on the forums, let alone on the board. We patients need that perspective to get the best out of our dealings with our individual doctors and with the research and clinical world.

  • Gingergrrl October 6, 2014, 3:19 pm

    @Mark @Butydoc and @Jonathan Edwards This is incredible news and made me very happy to read it. I agree with @Sasha that we cannot put words to the value of having two doctors on our board. Excellent choices and thank you both for accepting the position and challenges that lie ahead.

    Some day when I am better, it is my goal to use my skills as an LCSW and advocate to volunteer to help Phoenix Rising and give back for all the help you guys have given me. I am not quite well enough yet to be of help (and I lack computer skills) but I know there will be lots of things that I can do in the future.

    Excellent news about Dr. Solomon and Professor Edwards joining the PR board and thank you to Mark, Adin and all the countless people who have helped out behind the scenes :thumbsup:.

  • Ren October 6, 2014, 3:32 pm

    Thank you to all who do so much.

  • Esther12 October 6, 2014, 4:20 pm

    Thanks to Karen for her work, best of luck to Jonathan Edwards and Gary Solomon for their terms, and thanks to everyone involved in running PR as it is.

  • Butydoc October 6, 2014, 4:31 pm
    Sasha

    This is great news that we're gaining Dr Solomon and Prof. Edwards! We're very lucky to have them on the board.

    Thanks to Karen for all her behind-the-scenes work and to you and Adin for all you've done for us over the past couple of years, and continue to do.

    @Jonathan Edwards, @Butydoc, do you have anything in particular that you're hoping to achieve by joining the PR board?

    Hi Sasha,

    Thank you for your support and kind words. At the present time I'm just learning what the responsibilities of the presidency requires. I'm really open to any ideals that might improve our already great site. My personal goal is to have CFS/ME experts in research and clinical practice present to our site where they are now and where they heading. I have many ideas along with the rest of the board that we hope to bring to fruition in the near future.

    Best,
    Gary

  • NK17 October 6, 2014, 5:30 pm

    These are the news that I like!
    Welcome to our new board members @Butydoc and @Jonathan Edwards.
    You will surely help us grow in the right direction without forgetting that this forum is created by PWME or carers of PWME for PWME all over the world.
    A special thank you should obviously go to past board member Karen and present member Mark and Adin.
    Without you and PR our lives would be much darker.
    Let's continue to spread the knowledge and dispel the misinformation!

  • catly October 6, 2014, 5:52 pm

    Thanks to all of you!

    @Mark and Karen for all you have done for this board so far and,
    @Butydoc and @Jonathan Edwards a special thanks to you both for joining the PR BOD! I look forward to watching PR grow and hope that you (and we as PR participants) are successful in accomplishing new goals!

  • daisybell October 6, 2014, 5:58 pm

    Great news! Many, many thanks to all for the hard work and dedication.

  • taniaaust1 October 6, 2014, 11:05 pm

    Thank you Karen for your time and the energy you have put in here… thanks Mark, admin too, we wouldnt be here without you all. (Ive obviously gotten confused again as I thought Kina was on the board too as she's so ingrained in this site as an important mod).

    Ive been quite impressed with Professor Jonathan Edwards posts here,. Im yet to get to know butyDoc (Gary) at all (cant remember seeing a post of his, maybe that is my memory issues thou) but Im sure the board would of made a great choice (we do have a great board) and Im looking forward to seeing you about and getting to know you some throu whatever you do here.

    Im really looking forward to seeing where putting a couple of medical professions on the board will take us (as long as this site is always known as also a patient site… I hope that is never forgotten).

    …………

    I would be very interested with being on the board to offer ideas or opinons on things etc but I really dont know what I could offer as my only experience is as a severe ME person who just cant get basic health and support needs met throu the current biased towards ME government systems out there. I think my greatest qualification would be in completely understanding the discrimination around ME which goes on out there :wide-eyed:

    Whoever is choosen to go onto the board, Im sure will be good choices.

    Thanks Mark for this post sharing the direction PR is going.

  • Simon October 7, 2014, 2:24 am

    Wow, that's a very impressive boost to PR. Congratulations to @Mark on persuading people of such calibre to come on board – and thanks to @Butydoc and @Jonathan Edwards for their committment – good luck with all this, and I'm looking forward to seeing the fruits of this.

  • Cheshire October 7, 2014, 2:36 am

    Thanks to all of you. I don't often post, but I read a lot. PR has been essential to help me deal with this disease.

  • Hanna October 7, 2014, 10:20 am

    I am joining to all the words of gratitude that have been said so far : THANK YOU!

  • Nielk October 7, 2014, 10:28 am

    Count me in too. My congratulations to the new board members. I know that this is a hard commitment to make and am very appreciative. @Butydoc and @Jonathan Edwards, we are lucky to have you on board.:balloons:

    Thank you Karen for all your hard work on our behalf.

  • alex3619 October 7, 2014, 1:17 pm

    Welcome aboad! :)

  • snowathlete October 7, 2014, 1:26 pm

    Great news; a very good step forward. Well done Mark, Adin and Karen.
    Thank you Karen for your hard work; wishing you the best going forward.
    Welcome @Butydoc and @Jonathan Edwards!

  • Jonathan Edwards October 7, 2014, 2:11 pm
    Sasha

    This is great news that we're gaining Dr Solomon and Prof. Edwards! We're very lucky to have them on the board.

    Thanks to Karen for all her behind-the-scenes work and to you and Adin for all you've done for us over the past couple of years, and continue to do.

    @Jonathan Edwards, @Butydoc, do you have anything in particular that you're hoping to achieve by joining the PR board?

    Sasha,
    I guess the first thing I wanted to achieve was to make sure Mark and the moderators and all the others who contribute with hard work had the support they needed. If I am of use then I am pleased to be here. And as someone said, no way is this going to be anything other than a patient site, whoever is on the board.

    I would like to see PR fulfil its potential as a force for change. There are some things it can be very good at and others it should not try to do, but I am thinking that by connecting up with charities and researchers in ways that do not involve any loss of independence could be important. We have discussed some practical ideas but need to look at logistics carefully.

    I actually think PR is knocking on an open door in terms of patient empowerment because with the net that has to be the future. The question is how to be not only playing the game but ahead of the game. My impression is that Mark and the team already have a lot of ideas to take forward. They need help with critical mass at the centre and I would encourage PR members to think about being involved. It is all very friendly!

  • Sasha October 7, 2014, 2:25 pm

    Fantastic! Looking forward to more detail down the road.

  • roxie60 October 8, 2014, 11:15 am

    I am so grateful for PR and its members. Thanks for the update.

  • Gemini October 8, 2014, 2:47 pm

    Many thanks to Karen for her hard work and best wishes to her in the future!
    Welcome Dr. Solomon and Professor Edwards!
    Appreciate the update Mark. As others have said I too am grateful for PR and its members.

  • Comet October 8, 2014, 4:04 pm

    I lurk more than I post, but so appreciate all the hard work and valuable information that is put into this site. A huge thank you to all who put in so much effort to this forum! 😀

  • ahmo October 8, 2014, 10:37 pm

    Grateful thanks to all who make this site such an excellent resource and source of support.

  • Battery Muncher October 9, 2014, 10:44 am

    Thanks to Karen for helping to make this site what it is.

    Welcome to the new members of the board.

  • MeSci October 10, 2014, 9:31 am
    Jonathan Edwards

    Sasha,
    I guess the first thing I wanted to achieve was to make sure Mark and the moderators and all the others who contribute with hard work had the support they needed. If I am of use then I am pleased to be here. And as someone said, no way is this going to be anything other than a patient site, whoever is on the board.

    I would like to see PR fulfil its potential as a force for change. There are some things it can be very good at and others it should not try to do, but I am thinking that by connecting up with charities and researchers in ways that do not involve any loss of independence could be important. We have discussed some practical ideas but need to look at logistics carefully.

    I actually think PR is knocking on an open door in terms of patient empowerment because with the net that has to be the future. The question is how to be not only playing the game but ahead of the game. My impression is that Mark and the team already have a lot of ideas to take forward. They need help with critical mass at the centre and I would encourage PR members to think about being involved. It is all very friendly!

    I'm delighted that PR has caught you in its net! I devoured the info you posted in your first threads about Rituximab, but I suspect that many others shared my hope that you would soon join in some of the other threads, as you clearly have knowledge that is of great value to us.

    A very warm welcome to you and Dr. Solomon, and I echo what others have said in thanking existing and previous board members and others who help PR to run so brilliantly.

  • slayadragon October 11, 2014, 9:15 am

    Gary, I think I know you from discussions on ProHealth several years ago. Welcome aboard, if so!

    Lisa Petrison

  • barbc56 October 11, 2014, 10:05 am

    Wow, just wow!! This is so impressive.!:thumbsup:

    Go team Phoenix!

    Barb

  • Butydoc October 11, 2014, 10:32 am
    slayadragon

    Gary, I think I know you from discussions on ProHealth several years ago. Welcome aboard, if so!

    Lisa Petrison

    Hi Lisa,

    Yep, this is me. Thanks for the support.

    Best.
    Gary