This Important message for OCNMF members was sent to every email address I had, and crossposted accross multiple Marfan mailing lists, with only 2 replies, 1 of which was from out of the region. I guess silence speaks volumes.......  Friday - September 16, 2005 I have been inactive for about to a year due to my own family issues, but now it's time for me to make a decision. I've had many times over the past 7 years when my family issues have been overwhelming, and yet I seemed to keep the chapter going, but for some reason or another, this time I just couldn't seem to get re-focused. Was it the having to move unexpectedly, my youngest daughter's graduation, my father's battle with cancer, the loss of my job, reuniting with my best friend & helping with her son's battle with cancer (him & my son practically grew up together), and subsequent letting them to move in with us all summer after she lost her job & apartment, or my own increasing frequency of Stickler's Syndrome symptoms? Which one is the one that made doing Marfan's work too much; I don't know. I lost touch with National, didn't keep up on the Marfan's Digest, didn't follow-up after Mathew's surgery, and completely missed Jennie's surgery. There is a part of me that says that despite my own issues, it is completely inexcusable that I let things go so badly. There is another part that says "You're only human, and time and time again you asked for help with the chapter work, and except for Laurie, no one stepped up to help out of 300 members." Then I start the self-argument that I should have called National & let Cathie know what was going on, called around on the list & asked for help (despite that fact I have phone numbers for less than 50% of the list), and the counter argument that no one can do everything, and that we all fail sometimes, and it goes on and on. There are some practicalities that do need to be addressed. If I do step down, is there someone willing and able to pick up the duties? The fees for the web site are due in 3 weeks, and I am still out of work, so I have no clue if I can make the entire payment, and I would really hate to see the web page go down. The arrangement has been that I pay 1/2 ($50) & the chapter pays 1/2 ($50) (I use part of the space for my personal pages & about 1/2 for the OCNMF site). Normally I wouldn't mind paying all upfront and let the chapter reimburse me later, but $100 is something we I don't have right now as I am still out of work. If I do pull it from the OCNMF bank account, it will all but wipe out the chapter funds & leave nothing for a mailing in case our awesome researchers at OHSU need to get us together on short notice again. Financial reports have been behind for a long time. There is much work to be done. I have taken steps in case the decision to change leadership is confirmed, such as setting up a new email address that I could relinquish to a new president if needed. All of the mailing list is computerized, although it does need an update as well. I have done some more in depth filing of the paperwork. Hopefully this will make a transition easier if needed. So now I come to you - our members - and ask, where do we go from here? If you want to send me a scathing email to let me know how displeased you are, I totally understand. Daniel & I miss meeting other Marf's and still want to participate. I'm willing to try and get things restarted, or step down, which ever is best, but I want to do what's best for everyone, so I will leave it up to you. I await your input.

2005 Archives

This page was last updated on: April 15, 2006