By Greg Davis
Iron Butt 4 NF, an odd name for a fundraising event wouldn't you say? If you've ever ridden a motorcycle for hundreds of miles, you can relate to the title.
Your ongoing support has allowed us to take huge steps forward in 2016 in the fight against NF. Your efforts and contributions have been instrumental in advancing neurofibromatosis research, providing hope for the millions worldwide who live with NF, and bringing us ever closer to our shared goal of ending NF forever.
On Saturday, November 19, 2016, Dan and Jennifer Gilbert hosted the beNeFit IV – “An Aquatic Affair to End NF” in downtown Detroit, where more than 1,700 guests helped raise $5.1 million for the Children’s Tumor Foundation (CTF). Over the past four years, the beNeFit has raised a combined total of $16 million toward ending NF.
The Volunteer Leadership Council (VLC) Patient Engagement Task Force is administering a survey to gather information and resources that are used by patients and families living with NF. Question topics include support, medical, community, financial and education resources. The information collected will be used to better serve others living with NF through sharing resources, developing guides, and as a reference for developing future programs. By taking the time to participate in this survey, you can make a difference in the lives of other families and individuals affected by NF.
The new issue of NF News, the official newsletter of the Children's Tumor Foundation, is now available! In this issue you will find:
- 2017 Holiday Campaign: Together, we believe we can find an end to NF
- Successful Galas: Evenings to remember across the country!
- New Year, New Strategies: Looking forward in research priorities
- MEK Inhibitor Clinical Trial Update: Meet the Moss Family
- And so much more!