American Dystonia Society is now active
It is now officially a non-profit organization in the State of New Jersey and has a Federal Tax ID number. I will open a bank account and we will be ready to go. I have donated the money for registrations and start up. I promised financial transparency so here it is: $35 to register the domains dystoniasocety.com and dystoniasociety.org, $75 to form the company in NJ, $30 to register it as a Charity in the state of NJ and $50 for hosting the sites and e-mail for the first year. I will covered these costs out of my own pocket. It will cost $400 to initially apply for 501(c)(3) status, asssuming we will have a slow start and expect less than $10,000 in revenues for the first year. Every year thereafter, the annual fees to the IRS is $850 per year as revenues exceed $10,000 per year. So far, I have donated $190 to start OUR foundation. The $400 fee is too much to absorb on my fixed income and would like your help in the form of a charitable contribution to the American Dystonia Society. Now is the time to step up as I have, I need your help. Our first $400 in donations will go toward getting our tax exempt status.
Like most Dystonians with generalized, multifocal or hemi Dystonia, I only have a few good hours a week and I'm going into my 15th week of my last Botox Cycle so please bear with me as I slowly build the web site and deal with paperwork. Any volunteers for the web site?
Like most Dystonians with generalized, multifocal or hemi Dystonia, I only have a few good hours a week and I'm going into my 15th week of my last Botox Cycle so please bear with me as I slowly build the web site and deal with paperwork. Any volunteers for the web site?
Replies to This Discussion
-
Permalink Reply by Jenn on
-
1st to POST ---->YAY!!!
Mission statement.. Goals.. details.. information on how to donate.. so this information can be spread outside of the wego community....
-
Permalink Reply by noelv on -
Jenn, Its all coming. It took me all day just to form the foundation and register it. I hope to have the web site up and running tomorrow with the mission statement, contact info, address and what ever I can throw out there in my 2 good hours. I thought you were going to help, call me.
-
Permalink Reply by Rebekah on -
I am SO proud of you and this and I volunteer for anything you need that I can do. LOL
I have no money at all, but will contribute whenever I do get some money.
I can help with a basic html site, writing, etc. creative things.
Will this absorb care4dystonia entirely or sister it??
-
Permalink Reply by noelv on
-
Care4Dystonia is a patient to patient forum and will continue. We have a wonderful group of people there and on WEGO that there is no need to duplicate it or replace it. AMS's web site will have links to both forums. Can you do a logo for us? My thought is to base it on a perrenial flower like Beka's favorite, a rose. Dystonians are like roses, we get pruned back regularly, we look horrendous in the winter (except where I grew up in California) like we will go away but we come back full, strong, and beautiful as ever. Suggestions are welcome.
-
Permalink Reply by Ellen S on -
Super job!! Can't wait to see it all blossoming. Will work to spread the word as soon as you let us know the basic info is up and running.
I wish I knew more about programming and building websites, I'd lend a hand. Maybe somebody else will step in this weekend who's more tech savvy... You need some help for sure.
You're terrific - keep up the great work!
Got any fundraisers in mind yet? Holidays are a great time...
-
Permalink Reply by Rosemary on -
Website is www.dystoniasociety.org (If you search American Dystonia Society is does not come up, at least not yet.)
More background on the evolution of this organization is available at "We need to effect change in the status quo to get better progress in research and patient advocacy" discussion
-
Permalink Reply by noelv on
-
It will be ready in a few days. Not with bells and whistles but relevant content like mission statement. What makes us different, etc..Welcome on board with any help you can give. Spreading the word, writing, tell us your story, send a picture. I like the idea of a gallery so people can see the faces of Dystonia and we are not ashamed.
Let's make it real to the general public and let them know any of them can develop Dystonia from head trauma or a drug side effect. This is not solely a genetic disease nor is it contagious but it is random. I have to sign off for a few days, nurse's orders.
© 2009 Created by Marie
