NMSS Donations to CCSVI

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

NMSS Donations to CCSVI

Postby Sharon » Thu Jan 07, 2010 10:33 pm

This is a document that I forgot about over the Christmas Holidays. Explains how the NMSS is accepting donations for CCSVI - document is a .pdf file addresed to the Chapter Presidents
Date: 12/18/2009
Treatment of Offers to Donate to Chronic Cerebrospinal Venous Insufficiency (CCSVI) Research
Significant international media attention has focused on whether chronic cerebrospinal venous insufficiency (CCSVI), a dysfunction of brain blood flow and/or blood drainage, may contribute to nervous system damage in MS. We are hopeful that this exciting avenue may lead to promising therapeutic approaches for people living with MS A summary of this topic can be accessed at http://www.nationalmssociety.org/news/n ... x?nid=2206. As a result of these news stories, a number of constituents have inquired about the possibility of contributing to research focusing on CCSVI.
Because of the timing issues described below, we ask that you refrain from proactively promoting contributions at this time. However, we expect that donors may approach us to make restricted gifts for CCSVI research.
Should you speak with a donor with this interest, you should understand and share the following information.
1) Requirement of Recommendation through Scientific Peer Review. We are the only MS organization in the nation that is driving an effort to support further research in CCSVI. As you know, the Society’s research process requires that Society funds be distributed only to projects that have been reviewed and recommended for funding by our scientific peer review panels. This core tenet of our program ensures that we support the most promising science worldwide. In the case of CCSVI, applications will be reviewed by an international scientific peer review panel. The MS Societies of the US and Canada are taking primary responsibility for convening this panel, and other MS societies that are a part of the international community may participate as well. This is the first time a joint panel has been convened for review of projects on a single topic area, and will ensure that an appropriate range of issues is addressed. We are excited about this new collaborative approach to quickly, effectively and competently analyze and rate submitted projects.
2) Status of CCSVI Project Review. Research applications on CCSVI are due in February with the review to take place later in the spring. The Society will be in a position to distribute funds to CCSVI research when one or more projects are approved at that time.
3) Treatment of Current Donations to CCSVI Research. Donors should know that contributions received cannot be distributed until a project is approved through our peer review process. Any gifts received will be held in a separate account pending the decision of the peer review panel. If a project is approved (and we believe that one or more are likely to be), the contribution will be distributed and the donor will receive an IRS acknowledgment at that time. In the very unlikely event that no projects are approved, we will talk with donors about refunding or redirecting their gifts.
While we do not typically accept and hold donations for projects pending review and approval, we are doing so in this case because of the special circumstances attendant to interest generated by significant media exposure. If you are approached by a donor who is considering a gift, please call Mary Milgrom or Carrie Radant to discuss more detailed considerations.
In addition, it is essential that gifts directed to CCSVI research be coded in the following manner to facilitate proper tracking. Please code the gift as usual using the 200 fund code to designate as research. When submitting the monthly remittance report, please indicate the amount for CCSVI. We will track these funds separately at the home office.
Should you have questions about donations for CCSVI, please contact Mary Milgrom at 303.698.6103 (mary.milgrom@nmss.org) or Lisa Risi at
21.476.0424 (lisa.risi@mss.org).


I thought this might be of interest to some. Link to article:
www.nationalmssociety.org/news/news-det ... x?id=17413

Sharon
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Postby Rose2 » Thu Jan 07, 2010 10:55 pm

HUH????????????
No excitement or much positive CCSVI info BUT gosh darn, they WILL change their Take the Money Policy due to the amount of media coverage??????????
I would like to get my name on the list so I can hold and invest all of the money that people will be coming forward to donate.
I mean really? Am I missing something or just reading this with a jaded outlook to begin with??
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Postby fogdweller » Thu Jan 07, 2010 11:52 pm

Rose2, we must be reading different e-mail messages. I for one am glad that they are willing to take and hold money for research i this area even though they do not yet have an approved project.

Here are some of the things in the message that seem very supportive of the CCSVI RESEARCH.

"We are hopeful that this exciting avenue may lead to promising therapeutic approaches for people living with MS...

We are the only MS organization in the nation that is driving an effort to support further research in CCSVI.
...
This core tenet of our program ensures that we support the most promising science worldwide. In the case of CCSVI, applications will be reviewed by an international scientific peer review panel. The MS Societies of the US and Canada are taking primary responsibility for convening this panel, and other MS societies that are a part of the international community may participate as well. This is the first time a joint panel has been convened for review of projects on a single topic area, and will ensure that an appropriate range of issues is addressed."
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Postby bestadmom » Fri Jan 08, 2010 8:12 am

I wouldn't give the NMSS a nickel. They only apply 17% of donations to research and since they won't fund any CCSVI research untl June why should they sit on my $$.

There are dedicated funds set up already at Stanford and Buffalo and others will follow shorty. I'd prefer to control how my money is invested and I'll donate to the causes and research I feel are the most worthy. The researchers need our money now, not in 6 months.
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Postby mangio » Fri Jan 08, 2010 10:02 am

bestadmom,
The model I have always admired is the foundation Avon started years
ago and apparently contributes hugh portions of all dollars donated
directly to researchers (some say as high as 90-93pc) - at least that
is what my Avon lady says.
To date roughly 300 million.
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Postby bestadmom » Fri Jan 08, 2010 10:10 am

Maybe the fundraisers at BNAC can try to get something from Avon. After all ms hits women more often than men. Thanks for passing the info on. Their corporate headquarters are 10 minutes from my house.

High overhead doesn't fly with me. I'm a roll up my sleeves kind of person and just can't see the justification for cushy offices, an a cast of thousands to get a job done.
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Postby fogdweller » Fri Jan 08, 2010 6:03 pm

Having read the posts about high overhead and low contribution $$ to research, I I agree. Also I was reading a separate post about the timeline for approval of projects, and it was REDIDCULOUS. Not even starting until summer.

Big hoopla about putting together an international group to review the proposals, but that is going to take months, and the beurocracy to get them to review, and then approve before NMSS would fund the project. Rediculous.

I have been in medical device start-up businesses for the past 20 years, and it makes some sense if the institution's ethics committee only convense eevery couple months that you can't get intitutional approval until then, but usually a month or two is all you need. The results will already be back from many diagnostic studies before they even consider the proposals. Probably guarantees they won't have to fund much.
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