NF Smarty Pants

Archive for May, 2008

Great Steps is a 3K family walk along Naperville, Illinois’s downtown Riverwalk area. A picnic lunch, raffles, and entertainment will immediately follow the walk. This year’s goal is to raise more than $100,000 for NF research.

Neurofibromatosis, Inc. Northeast is looking for people to join in their unique fundraising effort at the New Hampshire Motor Speedway on June 29 for the LENOX Industrial Tools 301.

NF-Mid-Atlantic is organizing a group trip to see the Washington Mystics on May 31.

Last week, we wished the Run4Leah team good luck at last weekend’s Buffalo Marathon. This week, we congratulate them for their efforts at the event and for surpassing their set fundraising total. WIVB News has their follow-up report up.

Jessica Stone had a tumor the size of a lemon growing on her brain stem. If she left it, it would have threatened her life. If she chose to have it surgically removed, she would lose her hearing. Local news stations have documented her decisions and changes. Jessica has also provided video diaries of her experiences and thoughts. See them here: Local news:

• Matt Nathanson concert
• stories one and two
• one month later

Jessica’s videos:

• thirty days before the surgery
• a trip to the beach
• morning smoothies
• the day before the surgery

Jessica’s Myspace Page

Jessica’s Myspace Blog

UK scientists have identified the protein c-Jun as the regulator of Schwann cell plasticity. Schwann cells make up the insulation around certain parts of our nerve fibers. It is the overproduction of these Schwann cells that produce the benign tumors called neurofibromas. These scientists hope that additional study may be able to tell them if it is the c-Jun protein that causes the hyperactivity in Schwann cells.

Senator Ted Kennedy has been diagnosed as having a cancerous brain tumor. This sad and unfortunate national news is bringing increased media attention to the subjects of cancers, tumors, and Neurofibromatosis.

Using a remote controlled robot arm called NeuroArm, doctors removed a complex brain tumor from 21-year-old Paige Nickason. This procedure is thought to be the first of its kind.

Congratulations and best wishes to John, Linda, and Leah Manth, and their marathon teams at this Sunday’s running of the Buffalo Marathon. Eight-year-old Leah has NF2, and her family and friends have banded together to raise money and awareness through the Run4NF program.

Click here to read the East Aurora Advertiser’s story and click here to see their First Giving page.

Jodi Harrington is an Oregon native who is walking across America in honor of her friend Jeremy Eby, who has NF. Her walking partner, Josh Howell, is making the journey for his mother and The Alzheimer’s Association.

Learn their stories at Hugs for Humanity and donate to Jodi’s campaign through First Giving. They both have travel journals going so you can follow their progress: Josh / Jodi.