Because I said negative things about the CAA, I also want to say that I am really impressed with Jennie's willingness to read these threads and respond. When I think of the CAA, I don't think of patient/volunteers like her who are on the board and doing all they can. Especially not when I feel disgruntled with the group in general.
I would really like to see an interview with someone like her-- what is it like to be a patient and volunteer time and energy to the CAA board. Not an "expose" type of piece, but simply information as to the inner workings and the main focus of their time spent, the types of obstacles and frustrations, as well as the vision and goals. I know what the healthy, paid people look like, and where they come from, but I don't know anything about what it's like being a volunteer for them.
I want to listen as well as comment.
Coincidentally, Cort and I did a Q&A recently that he is considering for use on the blog. I don't want to infringe on that material, but it did focus mainly on the organizational stuff more than me as a person.
I would love to brag on our Board a little bit! Of the 14 Board members, 8 of us are patients. Several of us, including me, are housebound - and service on the Board takes a lot of time/energy. For some of us, it is the only thing we do apart from activities of daily life. We are a working Board, not a money Board. We don't write checks to get on the Board, and it's more than a meeting or two. No one gets any prestige from serving on the Board; it doesn't build anyone's resume. I said in one meeting that none of us are there for ourselves; we are there for the people we love. For some, they have children, siblings, or spouses with CFS, and they serve to improve their loved ones' lives. For someone like me, I serve not for myself as a patient, but because my husband deserves a healthy wife and my parents deserve grandchildren - and CFS stole that from them as much as me.
The biggest frustration we have on the Board is money. We have so many more ideas than there are resources to make them happen. Every Board member participates in fundraising in some way, and we do more every year. We measure our performance as a group, and get training on how to do it better. The other main focus of the Board's work is strategy and vision. We spent 18 months in strategic planning, and charting the five year strategy for the Association. This was extraordinarily demanding work, but several Board members have professional expertise in strategic planning and this helped tremendously.
When I attended my very first Board meeting, I felt overwhelming relief and excitement because this group gets it. Every member has been touched by CFS in a personal way, and that makes us all direct stakeholders in the organization's work. When one or more of us starts to fade in a meeting, everyone at the table
understands. It's a very supportive group.
Personally, I am blown away by the dedication and commitment of the Board members. They attend many meetings (conference call or in person) and spend a great deal of time in fundraising, committee work, and engaging on issues. Members have testified at CFSAC meetings, and the CDC strategic plan public comment session. They make themselves available to the media, and share their personal stories with colleagues and friends. Every Board member, even the healthy ones, make personal sacrifices to serve.
I hope this addresses some of what you wanted to know about us. I'm happy to answer questions to the best of my ability.
