NF Smarty Pants

Archive for July, 2008

The 10th Annual Golf Outing by NF, Inc. Midwest will take place on August 15 at the Prairie Landing Golf Club in West Chicago, Illinois.

This year, the Wheelabrator Golf Tournament is happening on August 11 in North Reading, MA. Registration is limited to the first one hundred golfers.

Yvonne Foong has one of the most popular blogs in the world. She is currently a psychology student in her home country of Malaysia. Yvonne was diagnosed with NF2 in 2002 and often writes about living with the disease in her entries.

Joseph and Tricia Toussaint want to improve the hospital services for the Children’s Hospital of Philadelphia. Their young daughter Adelaide passed away from neurofibromatosis-related complications in 2007. But while she was being treated at the hospital, the Toussaint parents found that the environment was not friendly to their other two children.

They hope to establish a center where visiting children can and will want to stay during trips to see their siblings. There is one planned fundraiser so far with more in the works.

Other sites to visit:

• Read about Adelaide and the Toussaint plan.
• Donate to the cause.

Kevin Alexander received a personal tour of the new Air Bus 380 aircraft. Kevin has loved flying and airplanes all his life. Through the Make-A-Wish Foundation UK, he received a very special day and a certificate good for five free flying lessons.

The Brandon (Florida) News & Tribune has a story about how the Brandon Community Foundation provides support and assistance to families in need in the Brandon area. The story focuses on a family with a daughter who has NF1 and cancer.

Illinois NF, Inc. has changed its name to NF, Inc. Midwest to reflect the area of its service.

Contrary to beneficial results in mice with NF1 related learning disabilities, researchers testing Simvastatin (found in the popular drug Zocor) did not find that the results duplicated in human trials. The Journal of the American Medical Association published their findings recently. Synopses and news story summaries are available at:

• US News and World Report
• Reuters
• MedPage Today

The fundraising effort to collect donations to cover James O’Neal’s tumor removal surgeries has reached the national media. Read the coverage from:

• ABC News
• FOX News

Chasing Down the Cure. Saturday, August 2 in Carmel, Indiana. Early registration (until July 22) is only $15 and you are guaranteed an event t-shirt.