American Dystonia Society Leadership
This foundation was formed by me and I am it's CEO and the only signatory on the accounts that have been set up for ADS. It is OUR group however and I am acting on behalf of all who are affected by Dystonia. I am not exclusionary by nature and welcome everyone's input and experience. This foundation has been in my mind for a year and did not act on it because I thought we were being served by 2 giant effective organizations.
Recently, someone posted the question, "What has DMRF done?" Like everyone else, I started to look and we all saw a pair of foundations that does some great things for research and supported some brilliant neurologists in research. But there were some disappointing surprises. They were not as big as we thought, $5.4M in donations in 2007 (even smaller when you discover Bachmann-Strauss' s 2007 990 includes a $250,000 transfer to DMRF. So instead of $1.6M delivered to research, it is actually only $1.35M
Experts in medical research have told me that critical mass for effective private foundation support for research is at minimum $20-25M. $10M or more will get a lot more ideas into incubation. NIH usually provides the money to continue promising research funded initially by private foundation grants.
Everything above spurred me into action and American Dystonia Society exists now because of all of us and the belief that we can do better. I have set lofty goals for us and this foundation of reaching $25M per year in 10 years. Even if we raise only $2M a year and are 80% efficient, then we will more than double what DMRF and B-S gave to research in 2007.
The short answer to your question is that I am the leader of this foundation. Beka has been a friend and my patient advocate long before ADS was formed. She was in the process of stepping away from Care4Dystonia and WEGO and those forums would have disappeared has she not allowed me to take over as moderator. If she wants to divest herself completely from Care4Dystonia as she was planning, ADS would be more than happy to absorb it and continue its good work.
Beka's comments were made because she knows how much pain I am in now and even an hour ot two a day takes tremendous effort and she wants me to take a few days off. I have backed off a little to reenergize and wait until my new Botox shots take effect but I am here because many of us don't get the relief I do and I can't ignore them. Many of us haven't even been diagnosed. It's important and here I am giving you a long answer instead of taking weight off my neck and resting all day.
If anyone doubts my leadership, make no mistake, this is my project and you are all my inspiration.
I am recruiting science board members, including brigt young neurologists who can give fresh perspective to research and what we want to accomplish and trusted friends who are well placed in the medical world and of course, my own neurologist who will get the pitch Tuesday when I get my Botox shots. I am recruiting GPs and internists who are the part of the front lines for recognizing possible Dystonia cases and getting them to the next level of care. This foundation will reflect my philosophy of being inclusionary, forward looking, and the use of 21st century technology to keep costs down. Iam a trained scientist/engineer and former entrepreneur not a socialite or a professional lobbyist.
Recently, someone posted the question, "What has DMRF done?" Like everyone else, I started to look and we all saw a pair of foundations that does some great things for research and supported some brilliant neurologists in research. But there were some disappointing surprises. They were not as big as we thought, $5.4M in donations in 2007 (even smaller when you discover Bachmann-Strauss' s 2007 990 includes a $250,000 transfer to DMRF. So instead of $1.6M delivered to research, it is actually only $1.35M
Experts in medical research have told me that critical mass for effective private foundation support for research is at minimum $20-25M. $10M or more will get a lot more ideas into incubation. NIH usually provides the money to continue promising research funded initially by private foundation grants.
Everything above spurred me into action and American Dystonia Society exists now because of all of us and the belief that we can do better. I have set lofty goals for us and this foundation of reaching $25M per year in 10 years. Even if we raise only $2M a year and are 80% efficient, then we will more than double what DMRF and B-S gave to research in 2007.
The short answer to your question is that I am the leader of this foundation. Beka has been a friend and my patient advocate long before ADS was formed. She was in the process of stepping away from Care4Dystonia and WEGO and those forums would have disappeared has she not allowed me to take over as moderator. If she wants to divest herself completely from Care4Dystonia as she was planning, ADS would be more than happy to absorb it and continue its good work.
Beka's comments were made because she knows how much pain I am in now and even an hour ot two a day takes tremendous effort and she wants me to take a few days off. I have backed off a little to reenergize and wait until my new Botox shots take effect but I am here because many of us don't get the relief I do and I can't ignore them. Many of us haven't even been diagnosed. It's important and here I am giving you a long answer instead of taking weight off my neck and resting all day.
If anyone doubts my leadership, make no mistake, this is my project and you are all my inspiration.
I am recruiting science board members, including brigt young neurologists who can give fresh perspective to research and what we want to accomplish and trusted friends who are well placed in the medical world and of course, my own neurologist who will get the pitch Tuesday when I get my Botox shots. I am recruiting GPs and internists who are the part of the front lines for recognizing possible Dystonia cases and getting them to the next level of care. This foundation will reflect my philosophy of being inclusionary, forward looking, and the use of 21st century technology to keep costs down. Iam a trained scientist/engineer and former entrepreneur not a socialite or a professional lobbyist.
Replies to This Discussion
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Permalink Reply by noelv on -
I am sure to get chastised by Beka for not taking the day off but Dystonia doesn't take the day off and like all of you, I am excited that this is finally happening and you and my friends and family gave me the strength to start this. Your support and the volunteers who are stepping up are more important than I am to the future success of the ADS. Time for my nap.
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Permalink Reply by Jenn on
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I am a wannabe socialite :P
SRSLY though, thank you for taking the time to explain your vision and goals for the American Dystonia Society. So much has to be done in the dystonia community and I am sure there is plenty of work for everyone. I hope that this organization can fill any gaps that we currently have and allow all of the non-profits a better chance to maximize on their individual contributions to the dystonia community.
There may be less than 300 of us on WEGO but there are nearly half a million of us on this continent. If we all do something, supporting organizations that best fulfill our needs and advocating for ourselves we can make a huge change to this disorder. There may not be one path to a cure.. but there is definitely one common goal. In my opinion.. the more people looking the better.
I am excited that there will be another organization working for the dystonia community and I am looking forward to a future where we make some big changes! Noel thank you for the hard work you are doing.
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Permalink Reply by Rosemary on -
Hi Noel: Let us know how your pitch goes. I will see my Physiatrist on Thurs but- given time constraints on docs these days- usually hardly have time to get my injections, never mind bring up something like this, but I will try. This docs background is chemical engineering prior to MD. He also has his MBA. Again, I don't know how interested he is, but I will try.
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