We need to effect change in the status quo to get better progress in research and patient advocacy.
We need a real grassroots movement to effect change in the Dystonia Community. We want to speak with one real voice and one organization that works for patients and reduce the total overhead that is prevalent with ALL of the Dystonia foundations and organizations. Let me know if you want to effect real change in awareness and advocacy. After 30 years, there is no brand awareness for any of the current foundations and most of the target contributors are Dystonia patients who need the real help. One foundation spent 13.9% in CEO salary compared to the amount awarded in grants. Total salaries were equivalent to 82% of what it awarded in grants. Another paid its CEO 28.5% of the amount it paid out in grants and total salaries were 44.9% of the amount it paid in grants. Both foundations paid out approximately 31% of its donations in grants. That is unacceptable. You would be better off donating your money directly to the research institutions and earmark it for Dystonia research. We have to do better and we can. WE HAVE TO FOR OUR SAKE!!!!!
Replies to This Discussion
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Permalink Reply by noelv on -
I am not knocking the fine work being done by these organizations but more can be done with the money donated. If these 2 organizations were 1, all of the donations from the second one can go to research and patients instead of a paltry 31%.
I cranked the numbers out for the larger organization absorbing the smaller and assumed that all of the donations to the smaller one go out as grants. In this situation, the CEO's salary is 5% of the value of the grants, total salaries is equal to 29% of the grants, and 55% of the donations actually goes out to grants. Better but still pitiful. WE DESERVE BETTER!!!!!
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Permalink Reply by noelv on
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Before soneone brings it up, the MDA pays out $49M out of $137M collected. Their CEO draws a salary equal to the 2 Dystonia CEOs who collect $5.5M and disburse $1.6M. The MDA is a very large organization with hundreds of paid employees, lobbyists, but they deliver 25 times as much money for research, at a level that is 35% of the donations. This is a better performance than either Dystonia foundations. We have such precious few resources to use that we cannot afford to waste it..
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Permalink Reply by noelv on
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I looked at the performance of the MJ Fox Foundation, they awarded almost $39M in grants and took in $47M in donations in 2007. That is a whopping 83%. The National Parkinson's Foundation collected $9M in 2008 and awarded nearly $7M in grants, that is 77%. Tell me, if you are donating money, what kind of efficiency would you like to see? 31% or 83%?I know one thing, I am stopping my donations to DMRF and sending the money directly to institutions where I know 100% goes toward research. 10-25% of my eBay sales, which is what my once thriving consulting business is reduced to doing, used to go to DMRF through the eBay giving program. That came to a halt yesterday. If I get enough help and I know I can't do it alone because of my Dystonia, we will have a truly effective organization that works for you the patient and NO POLITICS!!!!!
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Permalink Reply by Rosemary on -
Thanks for posting this, Noel. For those new to this discussion, it was introduced under "Twisted People". The analysis he has done and posted is striking- and disturbing. I am not quite sure how we are going to do it but you should let Noel know if you would like more info or are interested in participating some how in changing this state of affairs (ie., poor dystonia public recognition and poor research funding).
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Permalink Reply by beka on -
OK, Noel please tell us were the www.dystoniasociety.org stands - American Dystonia Society ? Do you want to limit this to America or broaden its scope to include Worldwide Dystonia Society ??
SO, all can speak with one voice ??
beka
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Permalink Reply by Rosemary on
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I know there are Dystonia groups in Ireland and England. Not sure where else. There are, of course, braintalk and wemove for worldwide discussion. As I understand it, Noel would like to see more money going to research (and rightfully so) than DMRF and BS currently achieve. I may be off base but it seems if we want to further more funding going to research and better public recognition/understanding of what Dystonia is, it might be better to make it US centered to get NIH funding etc.... Again, I could be wrong- just my gut take.
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Permalink Reply by noelv on
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I appreciate what every group has done but $1.6M a year going to reearch is not going to get us anywhere. Experts tell me critical mass for furthering medical research is in the $25-50M range. Even $10M to the right people will go a long way. With a 31% delivery rate, many corporate charity managers and Philanthropic Foundation managers won't even consider them as candidates. We are not looking to replace them but to try to do what needs to be done. We have our lives at stake and we will help ourselves.
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Permalink Reply by Jenn on
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Rosemary there is a link of worldwide dystonia orgs on my (needs to be updated) blog:
http://thiswriterscramp.blogspot.com
Down near the right hand corner I believe.
There were quite a few.. but definitely not enough organizations.
Globally, North Africa, Central America, and Asia did not have any organizations listed online.
Every other 'continent' had at least one.
Europe has multiple.
The information was pulled from wemove.. and I verified each organization by visiting their website and searching for information about them.
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Permalink Reply by noelv on
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Right now, we are focused on the US where I am familiar with the centers for Dystonia Research. I am not sure about awarding grants overseas right now but I know it can be done and if there is promising research anywhere in the world, by God, we will support it. We have 300,000 Americans with Dystonia and possibly up to 700,000 more. We can have a very loud voice. I know Robert is in Ireland and Judy Reeves is in the UK, we can coordinate a worldwide effort wherever anyone wants to establish a Dystonia Society and believes in our mission.
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Permalink Reply by Rosemary on
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http://www.dystoniasociety.org/ is up. Have you been busy setting this up? (did you get my email?)
What is next?
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Permalink Reply by noelv on
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I am busy setting this up. It is now official 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 registration so far. 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.
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