This Is MS Multiple Sclerosis Community: Knowledge & Support

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).