NF Smarty Pants

Archive for September, 2008

On Saturday, Congress finished appropriating $10 million within the Defense Appropriations bill for the Army’s NF Research Program. This is a $2 million dollar increase from last year.

NF, Inc. Midwest is looking for parent volunteers to provide feedback on how to improve and increase the organization’s services. To help, please call their office at (630) 932-8111 or send an email to info@nfmidwest.org.

Jeff Hanson is a fourteen-year-old painter in Kansas. His NF has resulted in a tumor on his optic nerve. Jeff is legally blind but has small holes in his vision. He paints in the colors and the energies he can see.<p>Through the Make-a-Wish Foundation, Jeff met Elton John in October. The singer and activist has asked Jeff to create twelve pieces to reside in some of his foundation’s AIDS facilities in South Africa.

Dr. Roger Packer provides his summary on the state of childhood brain tumor research and treatment at HemOnc Today.

The Make-A-Wish Foundation and the Home Builders Association of Burlington-Alamance County built 11-year-old Brooke Bristow a private game room. Brooke and her friends can play Nintendo Wii, air hockey, and watch dvds right in her own backyard.

St. Cecilia’s Parish
42 Main Street
Wilbraham, MA
6:00 – 9:00 pm

This fundraiser is in honor of Celia LaBarbera, a four-year-old child with NF2. The proceeds will benefit the Children’s Tumor Foundation.

Tickets are $25 and must be purchased by Oct. 1. For more information, please see the newstory by The Republican.

Grand Prix New York
333 North Bedford Road
Mount Kisco, NY 10549

Garage 419 is an online series for car enthusiasts. Their Garage 419 Invitational is a pro-am kart race that will benefit the Children’s Tumor Foundation and Racing 4 Research. If you would like to participate (no entry fee), you will have to think of the perfect six-worded reason for them to invite you. Apply at their website.

Autoblog’s Alex Nunez is in, and he’s excited.

Doctor Aaron Gitler of the University of Pennsylvania is recognized as a Rita Allen Foundation Scholar for 2008. He will receive a three-year $300,000 grant to further his studies into treatment options for neurofibromatosis.

Catch up with the story by following these links:

• Jessica Stone’s brain tumor surgery will cause hearing loss.
• Jessica Stone featured on Good Morning America.

Earlier this month, Jessica underwent surgery to have a cochlear implant inserted and connected. The implant will be activated in October. Only then will she know how much sound she may be able to experience again.

She continues to chronicle her decisions at her MySpace page.

The NF Action Group for LA
Time: 6:30-8PM
Place: Northridge Hospital
18300 Roscoe Blvd.
Northridge, CA 91328

Remaining meeting dates: 9/22, 10/20, 11/17, 12/15

Agenda:

• Sept. – Meet n Greet. Walk Recap and Plan Fall NF Awareness Day.
• Oct. – Meet n Greet. Kick off Recycling Campaign.
• Nov. – Meet n Greet. Set date for the end of the year Fundraising Dinner. Part of dinner profits to NF.
• Dec. – Pot Luck, Guest Speaker, Develop Goals for 2009.