Curious

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Curious

Postby scoobyjude » Mon Apr 09, 2007 6:15 pm

Read the last line

"Dancing With the Stars" fights MS
By Marilyn Beck and Stacy Jenel Smith
Article Launched: 04/09/2007 03:53:42 PM PDT


"Dancing With the Stars" is the inspiration for this year's Race to Erase MS gala being held Friday the 13th at the Hyatt Regency Century Plaza. The lineup of performers and celebrity fashion showmodels includes brothers Drew and brother Nick Lachey, Mario Lopez, Tia Carrere, Lisa Rinna and Harry Hamlin, Cheryl Burke, Louis van Amstel, Rachel Hunter, Stacy Keibler, Joey Lawrence, Jennifer Love Hewitt, Molly Simms, Emmy Rossum and Nicole Richie and her boyfriend, Joel Madden.

That's the word from the amazing, dynamic Nancy Davis — the force behind the events — this is the 14th — that she reports have raised "$30 million so far" in the fight against multiple sclerosis.

Davis, the mother of five who was diagnosed with MS herself at age 33 in 1991, started her Nancy Davis Foundation for Multiple Sclerosis in '93, and facilitates researchers from top hospitals and universities working together through her Center Without Walls.

She says she thinks the annual galas that she and designer Tommy Hilfiger spearhead are such a celebrity draw because "they're fun and easy for them to do." Earth, Wind & Fire will be playing. Ray Romano, Tom Arnold and Randy Jackson will be serving as auctioneers, with items on the block ranging from a fully tricked-out Ferrari to a trip to Amsterdam, "where Tommy Hilfiger will create a fashion line for you."
Best of all, "We're on the verge of being able to announce a major breakthrough in research," says Nancy.

Wonder what that is???
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Postby dignan » Mon Apr 09, 2007 10:28 pm

Thanks for that article, I don't remember reading about the Nancy Davis Foundation for Multiple Sclerosis. Naturally I had to go see what they are up to. Their news letter (here) has quite a bit of interesting and encouraging info, for instance:

Oral interferon tau
Four of the Centers (Harvard, OHSU, USC and UCSF) are collaborating on the study of oral interferon tau in patients with relapsing remitting MS or clinically isolated syndromes suggestive of early MS. Jeff Cohen at the Cleveland Clinic serves on the Data and Safety Monitoring Board. We have enrolled 28 patients in this study. All the patients have completed the
study except for one who will be done with study participation in January 2007. The medication has been well tolerated so far. This important ongoing study will evaluate whether oral interferon tau decreases MS activity on serial brain MRI scans. Oral interferon may turn out to be comparable to approved interferon beta with fewer side effects, and it is easier to administer. We anticipate that data analysis will be completed in February 2007 for report to the FDA. We plan to submit an abstract to the American Academy of Neurology for presentation of the data to the public in April 2007.


CTLA4-Ig
The Harvard team has completed a study of CTLA4-Ig in relapsing MS. CTLA-4Ig blocks T cell activation and suppresses inflammation. The data from the study showed that CTLA-4Ig is safe in MS and there is evidence of biologic activity by changes in the immune markers in the blood. They are now planning a phase II study.


Dilantin
The Yale group has started to evaluate safety and preliminary efficacy of oral Dilantin (a medication for epilepsy) as a potential neuroprotective agent in MS. In the animal model, this medication has protected the central nervous system from major brain cell death in the model for MS. As this oral agent has been used for decades in humans and is safe, it is exciting to prepare for a larger study that will confirm whether the drug also protects the brain of MS patients. Support is requested for MRI and a research assistant for this study.


Lipoic acid
After the on-going pharmacokinetic study of lipoic acid will be completed, OHSU will design in the coming year a trial of oral lipoic acid as an adjuvant therapy to interferon beta for patients with secondary progressive MS.
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Postby robbie » Tue Apr 10, 2007 6:48 am

When foundations raise money for research how is it decided where it goes. Do people like Nancy raise money for a certain research and Montel another, is it like an election where you support a certain canadate because you belive he or she is on the right path. So does say the MRF have it's own fundraising camp. They are in need of some money so are there people out there that go to work raising funds only for the MRF. Does all the money raised world wide go into a big pot and recearchers have to apply for some. The MSS gives u a pie chart of how the money raised is distributed and the biggest chunk is to research, but what research is it? Does every foundation or society have different ideas of where the money should go?

I know my posts are usually negative and worthless but this one is just truly wanting to understand better how this works. You always read of money, money needed , money raised. I know this is a complex question but is there an answer that will help. We give to the Cities Walk for MS every year and it would be great to know what research i am supporting..
Had ms for over 19 years now.
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Postby Lyon » Tue Apr 10, 2007 1:41 pm

Hi Robbie,
Despite the fact that fundraising seems so simple, and in it's basic form it really is kind of simple, but in other ways it's really kind of complicated. I know it probably doesn't seem like a satisfactory answer but everything you mentioned and more can and does happen.

Maybe it would make more sense if you consider the situation from the other direction. You're the director of the MRF and want money for research. Money is money and you'll take it from any quarter. Yes it's important to actively solicit funding so on one hand you are applying for grants from the NIH and NMSS and if your foundation has a good reputation there are also individuals and charities raising money for research like Montel and Nancy Davis who hopefully will look in your direction when it comes time to distribute the proceeds.

In other words, they have people whose job is to bring in money in about any way imaginable and in about every way you could think of to mention.....and it's still a struggle to come up with enough.

Bob
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Postby robbie » Wed Apr 11, 2007 6:29 am

Thanks Bob, so u just have look into what different foundations to see what they are trying to figure out. The words mylein repair really means somthing to me. I have alot of bare nerves inside me that need to be covered if i have any chance.
Had ms for over 19 years now.
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Postby Lyon » Wed Apr 11, 2007 8:23 am

Hi robbie,
Most of them have email addresses and would be happy to send you a list of where the money goes if you ask.

I personally expect great things from both Accelerated Cure Project and the Myelin Repair Foundation. One thing I haven't done is to check to see what percentage of their income is used for research and what percentage goes for fund raising and administrative costs. I expect these two charities would involve reasonable percentages but at this point I can't say for sure.

Bob
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Postby TonyJegs » Fri Apr 13, 2007 8:39 am

robbie wrote:When foundations raise money for research how is it decided where it goes. Do people like Nancy raise money for a certain research and Montel another, is it like an election where you support a certain canadate because you belive he or she is on the right path. So does say the MRF have it's own fundraising camp. They are in need of some money so are there people out there that go to work raising funds only for the MRF. Does all the money raised world wide go into a big pot and recearchers have to apply for some. The MSS gives u a pie chart of how the money raised is distributed and the biggest chunk is to research, but what research is it? Does every foundation or society have different ideas of where the money should go?

I know my posts are usually negative and worthless but this one is just truly wanting to understand better how this works. You always read of money, money needed , money raised. I know this is a complex question but is there an answer that will help. We give to the Cities Walk for MS every year and it would be great to know what research i am supporting..


-robbie

The core idea of organizing non-governmental help for MS people was good, first creators in every country were people with strong personal motivation (usually having a family member with MS). 50 years ago it was a right move aimed to bring more attention to this disease.

The situation with non-governmental funds/trusts/foundations is different now. Do your research and count them, you will be amazed of the number. I’ve seen some major ones at work and I’ve changed my opinion from very positive to opposite, let’s admit - with great personal sadness.
The slogan used is still the same – help for MS, it is unbeatable, and it prevents any criticism, keeps it at bay by default. Are you crazy; are you against helping MS people? Even if you say - of course not, your reputation will be damaged anyway.

I’ve mentioned several times about rising commercialization in current medicine and science, the same valid for NGO on MS nowadays.

If you want have a good living, travel for free, stay in good hotels for free, be honored by community, be known worldwide, increase your self-respect – start your own NGO.
Of course it will be not your major source of income, you have some already (poor people don’t start NGO!), but having nice live full of events for free - it is exiting.

To keep NGO running you need to attract: members with annual fee (countries), charity from people, charity from corporations, charity/donations from Big Pharma. Expect that money from Big Pharma will be your biggest source of income - why spend millions on advertising when it goes more effectively directly to your target consumer through respectable organization?

NGO on MS have no labs, no hospitals, nothing, but they come up with money and they hire persons to perform this and that, mostly for additional prove of effectiveness of current drugs (follow the money!); no one NGO works on ‘pure’ science. (Think about consequences of this practice, what it does with research.)

After several years, from start of your own NGO, you will realize that you have a very nice mechanism running. Flow of money in is stable and increasing (thanks to competition on the drugs market), and you have a great alternative to playing golf all the time. Even if you still playing golf, your partners will admire you – this guy is great, he makes a big deal for fighting MS.

For little guy it is great to get some attention from such NGO, like you get your luxury vacation for free, without feeling guilty for lavishing spending around, because you help to “fight ‘ MS.
No one NGO has paid directly to person with MS for his drugs (compensate the cost, sometimes unbearable), house improvement (adaptation for disables), and whatever he/she needs first. There is no hand-in-hand help; there is big deal around ‘fighting’ MS in larger scale.

Of course, not all people who are on Board of NGO are bad, not at all, and I think that majority of them truly believe that they really help and accept all indirect income and benefits as a natural compensation for their efforts (the question is – what kind of efforts?). More, most of them are nice, intelligent, educated in something, and they see nothing wrong in what they are doing, because that the way as it suppose to go, all NGOs made by the same model.

I think that NGO is a great western world invention how to make more money using tax-free money (think about labs, pharma and others) and it goes round.

Please don’t consider that I am totally against NGOs, of course not, they have some positive features. The reason why they became more controversial lays in increased distortions in nowadays world.

Kind regards,
Tony
"All truth passes through three stages.
First it is ridiculed.
Second it is violently opposed.
Third it is accepted as being self-evident."
Schopenhauer
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