June Meeting tonight - agenda is ideas for the VF website

The meeting tonight is again at 6PM at Deli-Berry (2520 Juan Tabo Blvd NE). You can find more details and map links on the nmvasculitis website:

http://www.nmvasculitis.org/Home/support/meetings

I hope to see some of you tonight, at Deli-Berry. I will be there at 6PM, and I will stay at least an hour. If someone joins me, we can stay as long as you like. If you cannot make a meeting, call me. I will be happy to meet for a drink sometime.

My agenda tonight is to solicit ideas about improving the Vasculitis Foundation website. I am on the committee to select the company which will redesign the website going forward, and I am very interested to hear your ideas about how things can be improved. If you cannot make it to the meeting, then please send me your thoughts in Email, or call me.

I want to take this opportunity to apologize to all of you for not posting to this blog during the past few months. I have answered phone calls and have been active in other ways, but not in ways that are apparent to most of you. Most of you never actually come to meetings, so it is an act of pure faith to keep holding them. I believe it is worthwhile for those times when someone does come. Sometimes it is a new patient with that deer in the headlights look, desperate for information on how to get started. Sometimes it is a chance to see one of my vasculitis friends, some of whom are becoming old friends. If and when you feel the need to participate in the vasculitis community, you can know that I and perhaps a few others will be there.

The flat fact is, I would love to see you. I feel that way every month at times like today, when I sit here wondering if anyone will show up and who they will be. I would love to see more patients, caregivers and friends of vasculitis come out to the meetings. Not only to share the practical knowledge about vasculitis, but also to break bread and share the day to day stories about your lives. 

I would really like to get to know you better. If you have any interest in cultivating friendships with people that can actually understand what you are going through, I beg you to come out to the meetings, and get to know each other better. I beg you to respond to the Email group, and share those little things -- large and small -- that make us all who we are.

Do you sometimes consider the connection between how increased awareness about vasculitis directly impacts the available public funding for research? Then do you think about the obvious conclusion that more research would mean a greater chance that more and better treatments will be developed? Have you also considered that how you include vasculitis awareness in your day to day life is a huge part of that effort?

It is not the big things that make the most difference. Sure, we can organize some event to spread awareness. But I have learned that is very hard to do without any help. It requires a concentration of energy and money on a particular place and time for a limited effect.

The more effective approach is to wear it on your sleeve and tell everyone you meet your story. Do not hide from it, share it. When you have told your story a few times, it gets easier, and it really does make a difference. When you tell it enough, you can do it without relying on just the sad parts, or the hard parts, you can eventually related how even the challenges can bring light into your life. People will respond to those stories as they relate to you on a personal level.

Those people you touch carry your story with them, and they will tell it to others. They will remember your story when they vote on legislation that impacts health care, and they will remember your story when they have the chance to make other choices that impact chronic illness. Even if they never come directly in contact with a vasculitis patient ever again, your story will impact how they relate to other things in their lives which will ultimately spread those little ripples that will positively impact you. Put it out there in the universe, and it will come back to you in ways you cannot imagine possible.

As always, the Vasculitis Foundation is here to help you connect to each other, and to connect with more information. But you are a part of that process, and I need your help. Just talking with you helps me to help others. I will spend time this summer reconnecting with those of you who I have met, and connecting with some of our newer patients whom I have not yet met face to face. 

Cheers!