President's Page
We’ve just completed one of the most successful years in our history. Not only did CurePSP raise over $4.5 million in gifts for research and education, but the CurePSP Genetics Consortium made some new and preliminary discoveries which could open doors to possible treatment opportunities. This was certainly a very exciting year!
In October 2008, a Mission Expansion Study Committee of the Board of Directors was tasked to explore the benefits and costs of expanding our mission to include some of these related disorders. The reasons for recommending a mission expansion were:
1. To enable CurePSP to serve more patients and families with PSP, CBD and related disorders
2. To enhance research efforts to include other PSP-like disorders
3. To expand our constituent base in order to raise more funds for research, outreach, education, operating expenses and advocacy.
After an extensive study of twenty-three related or associated disorders, the Board of CurePSP proposed to expand the mission to include five additional disorders (beyond PSP and CBD) in both or either our research mission (R) or our outreach & education mission (O&E). The five are: argyrophilic grain disease, lytico-bodig, Guadelupean tauopathy, multiple system atrophy, and pallidal degeneration.
As a result of the board’s decision to expand CurePSP’s mission, the revised mission statement now reads:
• Increase awareness of progressive supranuclear palsy, corticobasal degeneration, and related brain diseases; fund research toward cure and prevention; educate healthcare professionals; and provide support, information and hope for affected persons and their families.
Because of these additional changes to the mission, the board also felt that the “corporate name” should reflect the additional disorders. Consequently, the new corporate name was changed to Foundation for PSP | CBD and Related Brain Diseases. We will however continue to promote, market, and offer our services to the general public primarily through our familiar brand name CurePSP which has now been trademarked through the United States government.
The Foundation is very pleased to dedicate this year’s Annual Report to the Peebler PSP Research Foundation (Charles and Toni Peebler) in recognition of major support and completion of the first phase of the Campaign for the Charles D. Peebler, Jr. PSP and CBD Genetics Program. The campaign was completed on time and above goal with gifts totaling more than $1,211,000. (Please see the Honor Roll of Donors and the Research Reports for more detailed information on both the Campaign and the Genetics Program.)
By far the largest commitment to research at the Foundation was through the very generous support of the Irene and Abe Pollin Fund for CBD Research. A total of fifteen new grants were funded totaling $3 million. This is, by far, the largest commitment of funding for CBD in the world today and enables CurePSP to fully expand its research program into corticobasal degeneration.
We are most excited this year about the progress of the Charles D. Peebler, Jr. PSP and CBD Genetics Program. The Foundation’s genetics project is a multi-year venture to search the entire genome for genes related to PSP and CBD and to identify previously unsuspected abnormal biochemical pathways against which scientists may be able to target therapeutic interventions. All activities of the Genetics Program are carried out by the CurePSP Genetics Consortium, composed of neurologists, geneticists, and researchers from the United States, the United Kingdom, and Germany working in collaboration with neuroscientists throughout the world. (Please see the Research Program section of this report for some very exciting preliminary findings.)
While research, which leads to treatment and a cure, is of primary importance, the Foundation continues to be the primary source of education and information for those with PSP, CBD and for those who provide medical and health services to these individuals. During 2009, CurePSP reached many people throughout the world through family conferences, support groups, research symposiums, web-based seminars (webinars), a quarterly magazine, direct mail, and the web site.
As we enter our twentieth year of service, we look forward with a renewed commitment to our expanded mission, vision, and an abiding gratitude for our partners in this caring endeavor. On behalf of our board and staff, we thank you for your generous and active participation in the Foundation for PSP | CBD and Related Brain Diseases.
Richard Gordon Zyne, DMin
President - CEO
