BEAT DYSTONIA's second advocacy call is set for Sunday, February 7th
12pm PST, 1pm MST, 2pm CST and 3pm EST
(European folks, email me and we can figure out the time difference)
Please email beatdystonia@me.com to register. I will need name, phone # and email address.
An agenda will be sent out and with a little homework for those who are willing to participate.
A number of BEAT DYSTONIA attendees have expressed interest in fundraising for
a patient run non-profit with 1% overhead. Meaning, us.
Let me know if you are interested and I can send you the guidelines. It's easy and it would be much appreciated. I tend to do everything myself and I will admit that some help would be forever appreciated. As, you know, we are focused on science so that we can all feel better soon!
I will be using a different service next time, so anyone who is not registered will not be able to access the call. Just a heads up on that.
Also, minutes are meant for those who attend and for patients -- not to be posted since people are discussing private things and sharing private connections. I must be diligent about that so that we all feel safe.
Also, I would still love for people to buy BEAT DYSTONIA t-shirts. We are sold
out of XL, but have some left in other sizes. People love them and I am proud to say that I have
seen people whom I do not know wearing them in various cities. All good for us!
Much love,
Rogers
xo
(photograph courtesy of Barbara Green...www.barbaragreenphotography.com)
It's me checking in to see Dr. Lew at USC Medical Center
Posts
0 comments:
Post a Comment