Mark Berry introduces the new President of Phoenix Rising, Dr. Gary Solomon, and welcomes Professor Jonathan Edwards to the Phoenix Rising Board of Directors.
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
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
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
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.
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 firstname.lastname@example.org
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!