NF Smarty Pants

Archive for September, 2008

Austin Brasil, a 17-year-old with NF1, passed away two Mondays ago. When he was diagnosed with a brain tumor, he set out to help others.

With his passing, those inspired and touched by Austin’s work are forming Team Brother Bear. Their first garage sale raised $3000 to cover the organization’s formation expenses. At the first annual gala, the team raised $30,000. The goal of these funds is to help families caring for a member with a brain tumor and to assist other brain tumor organizations.

The AARP awarded Francis S. Collins with the organization’s Andrus Award, its most prestigious honor. Dr. Collins worked on the research teams that isolated the genes that cause neurofibromatosis, Huntington’s disease, cystic fibrosis, among others.

He went on to direct the Human Genome Project for the National Institutes of Health.

NF, Inc.-Northeast’s run/walk will take place at Horn Pond in Woburn, MA.

The road race is five miles. The health walk is 2.5 miles.

Friends Ride for Neurofibromatosis offers two ride options this year.

1. An end-to-end ride of Cape Cod (approximately 85 miles)
2. The Cape Cod Rail Trail (approximately 28 miles)

NF, Inc. Mid-Atlantic’s 2008 Symposium will be held at the Hershey Medical Center in Hershey, PA. The registration form is available on their website. Program elements include:

• “NF-1, NF-2, Schwannomatosis” Roger Ladda, M.D., Hershey Children’s Hospital
• “Medical Management of NF-2” Jonas Sheehan, M.D., Hershey Medical Center
• “Removal of Small Tumors” Rogerio Neves, M.D., Ph.D., Hershey Medical Center
• “Peripheral Nerve Tumors” Kimberly Harbaugh, M.D., Hershey Medical Center
• “NF Research at NIH” Doug Stewart, M.D., Nat’l Human Genome Research Institute
• “NF Research at Hershey” Kimberly Harbaugh, M.D., Hershey Medical Center
• “Learning Disabilities & NF” Elana Farace, Ph.D., Hershey Medical Center“Health Insurance” Paul Mendelsohn, NF, Inc.-Mid-Atlantic, Lanham, Maryland

NF, Inc. Mid-Atlantic is now accepting nomination letters for their Making a Difference Award. From their website:

Any professional in the Mid-Atlantic region of the United States physician, researchers, nurse, occupational, physical, speech therapist, social worker, genetic counselor, teacher or other individual who demonstrates an exceptional warm and giving heart is eligible to receive the Making A Difference Award.

NF, Inc. Midwest’s Annual Symposium has released its line-up for the 2008 conference. The brochure and registration form are both available for downloads as PDF files from their website.

Saturday, October 18
8:00 am – 4:00 pm

McDonald’s Hamburger University
2815 Jorie Blvd.
Oak Brook, IL

Topics include:

• Positive Exposure “Celebrating the Differences” (Rick Guidotti)
• Neurofibromatosis Overview
• SSDI, SSI, Medicaid and Medicare Overview (James M. Donner, JD)
• Neurofibromas: A Closer Look (James Tonsgard, MD)
• NF-1 Research Update: How Neurofibromas Form (Nancy Ratner, MD)
• NF Type 1 in Children (Robert Listernick, MD)
• Treatment Approaches to NF2 (James Tonsgard, MD)
• Approach to Vestibular Nerve Tumors and Hearing in Patients with NF-2 (Miriam Redleaf, MD)