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2010 Fundraising Dollars: Bettering the Lives of Individuals Living with NF

By December 2, 2010December 5th, 2023Awareness

Seven ways in which donors’ investments are bettering the lives of individuals living with NF:

Advancing Therapies – The Foundation has commenced the Neurofibromatosis Preclinical Consortium, a $4M, multi-year project, featuring six major US research Centers, that is advancing therapies through the pipeline and leveraging partnerships with Novartis, Genentech, Avila Therapeutics, and Pfizer to maximize invested funds.

Bettering Clinical Care – We are building an NFBioBank and Patient Registry to launch in 2011, that will work in collaboration with our NF Clinic Network. This will allow for centralized information on NF patients across the United States to standardize clinical care, ensure best practices, and speed clinical trials for individuals living with NF.

Leveraging Investments – Our Drug Discovery Initiative Awards have garnered more than $4M in follow-on funding from a Foundation investment of $400K. The Foundation provides ‘seed grants’ for innovative ideas to find drug treatments for NF related tumors, bone abnormalities and learning disabilities. This research had yielded results that have spurred much larger grants from industry and government agencies.

Providing Patient Support – Our NF Forum and local symposia have helped inform thousands of people across the country about the state of NF research, management options, Foundation resources, and ways to advocate for individuals living with NF.

Attracting Partnerships – This year began a historic partnership with Texas NF, an independent fundraising group, who partnered with the Foundation to fund research on NF1-related malignant tumors through the Foundation’s Young Investigator Award.

Driving Collaboration – For more than 20 years the Foundation has hosted the premier annual conference for NF clinicians and researchers. The 2010 NF Conference attracted a record attendance of more than 300 participants and offered webcasts, blog updates and various social media options to the public.

Ensuring Results – In 2010, the Foundation hosted a special summit to evaluate progress in NF2 clinical trials and plan future trials. Outcomes are published and inform the entire NF professional community of the latest advances in the field. In early 2011 the Foundation will host similar summits on NF1 bone abnormalities and learning disabilities.