Comments From Another Ex-Moderator
Posted 15 September 2009 - 12:07 AM
I certainly intend to keep coming to this forum. I also plan to continue writing my own blog and participating in the Facebook "Narcolepsy Support Group," which was the first place I felt accepted as a PWN. I am going to the Narcolepsy Network conference in Jacksonville, mostly because I want to see friends and be with other PWNs. That said, I too am hurting over the situation that has taken place, but I know that far more important than my loss is that these forums remain a place that all PWNs (particularly newly diagnosed individuals) can be supported and heard. I can't do that as a moderator right now, but I do hope to do what I can as a member.
I am so grateful for the many friends that I have made here. Please feel free to PM me if you ever need my support. I also hope to see some of you in Jacksonville. Finally, while things will be different with a new webmaster, I have hope in that regard too. If you are worried, please check out Seeds for Change, LLC and their website. They do specialize in non-profits and their ethical standards are high. In one of the more ironic twists of all this, Seeds for Change will likely advocate for many of the things that our previous webmaster wanted, but was unable to get approved. Thus, it will be interesting to watch what Seeds for Change is able to accomplish.
In the end, I want each PWN to know that you are constantly in my thoughts. I find this disease fascinating. I would wish it on no one, but I also know that I am a far better person because I have it than I would have been without it. One of the greatest gifts of narcolepsy is that it constantly forces me to take care of myself, which is one of the many reasons I am no longer a moderator. Please be open to the lessons that narcolepsy has for each of us. Please reach out to one another and let yourselves love and laugh and learn. More than anything, though, forgive - yourself, each other, me.
Posted 15 September 2009 - 05:59 AM
Your comments are so appreciated. I'm one of the long time members of this board, and have been a member of NN for several years. I admit I'm clueless as to the issues and problems that led to this change in webmaster/moderators. I am so sorry so many are finding it painful.
I am also sorry and disturbed to read the us/them comments about the NN board. They are us. All but a couple board members are PWN- the couple that aren't are like me- the spouse or parent of a PWN and all are volunteers. I'm glad to hear you adding some reason to the discussion.
To add to your comments, NN does a lot of great things. They are a wonderful resource and have helped us on the difficult journey to diagnosis and effective treatment. I'm happy to pay it forward by serving on the pediatric advisory board of NN. I wish my daughter & I could afford to go to Jacksonville, but it's not a great economic year in our household.
Posted 15 September 2009 - 06:16 AM
To add to your comments, NN does a lot of great things. They are a wonderful resource and have helped us on the difficult journey to diagnosis and effective treatment.
Amen. Well said, Sue. Thank you.