September 2010
11th Annual Italian Night Ticket Brochure
The 11th Annual "Italian Night" is Saturday November 13, 2010.
Secure your tickets NOW!
Support camp scholarships for the 2011 Camp New Friends
Clike here to download It._Night_ Brochure_2010.pdf
September 2010
Contribution Form for Italian Night
Want to help children with NF? Contribute an item for the silent auction at Italian Night 2010. Proceeds go to fund scholarships to Camp New Friends. Contribution form available in DOWNLOADS.
Thanks!
September 2010
Download the Brochure: NIH Study of Disease Severity in Adults with NF1
Announcement from NIH regarding a clinical study of adults with NF1:
DOWNLOAD AVAILABLEOverview: The Study of Disease Severity in Adults with NF1
We invite you to join a research study of neurofibromatosis type 1 (NF1) in adults at the National Institutes of Health (NIH). We are trying to answer a simple question: in a family with NF1, why do some family members have more serious disease than others? By asking this question, we hope to find genes that control the seriousness (or severity) of NF1.
Neurofibromatosis type 1 is a genetic disease that causes changes in the growth of nerves, skin and bones. It is found in about 1 in 3500 people. Both males and females can get NF1, it affects people of all races and ethnicities and the disease usually starts in childhood.
To find out more about the Neurofibromatosis Type 1 study at the National Human Genome Research Institute (NHGRI), please explore the Neurofibromatosis Type 1 Study Web pages.
Douglas R. Stewart, M.D.
National Human Genome Research Institute
National Institutes of Health
Contact Information
Sarah Coombes, M.S., C.G.C.
Protocol Coordinator/Genetic Counselor
National Human Genome Research Institute
National Institutes of Health
Building 10, CRC 5-1485
10 Center Drive MSC 1449
Bethesda, MD 20892
Phone: (301) 451-9145
Fax: (301) 480-9454
E-mail: coombessl@mail.nih.gov
Read full article
July 2010
Camp New Friends 2010 videos now available
GO TO THE VIDEO SECTION
April 2010
SUPPORT THE TEAM!!!
DONATION PAGE FOR TEAM NF
» Support Team NF
» Team NF Registration Form
» What Is Survivor Harbor 7?
April 2010
"Mindfulness" Downloads Available
Download Gerry Fisher's guide to combating Care Giver stress.
March 2010
New NF1 findings
Researchers target vascular disease linked to cancer-causing gene mutation
Researchers have discovered how a genetic disease known mainly for its life-threatening tumors also can cause sudden death from cardiovascular disease in children, and are mounting a clinical trial to develop treatments for the problem.
Scientists from the Indiana University School of Medicine found that the mutation that causes neurofibromatosis type 1 disease leads to arterial inflammation and damage that is similar to the long-term damage that can occur as people age. They reported their findings in the March issue of the Journal of Clinical Investigation.
http://www.physorg.com/news188577269.html
March 2010
THE SPRING NEWSLETTER HAS ARRIVED
Go to Press Room and click on Newsletters to download!
March 2010
NF Attends "Day On Capitol Hill"
Walt Sanders of NF Mid-Atlantic's Legislative Advisory Committee, represented NF Inc, during FDA Day on Capitol Hill on Thursday, March 11 with the Alliance for a Stronger FDA. Pictured from l to r is: Martha R. Nolan, Society for Women's Research; Walt Sanders; Virgil Miller, Counsel, House Energy and Commerce Committee; Joseph M. Hill, American Society of Health-System Pharmacists; and Patrick Carroll, Biotechnology Industries Association. The Alliance for a Stronger FDA, which consists of 180 different groups, including NF Inc. is seeking an additional $495 million over and above the President's request of $2.516 billion for the U.S. Food and Drug Administration.
