NF Smarty Pants

Archive for January, 2009

Coast Mental Health, a Vancouver-based mental health organization, is seeking nominations for its Courage to Come Back Award. The deadline for submissions is February 16.

In 2006, Jeneece Edroff, now 14, won the award for being a tireless fundraiser despite battling serious effects from her NF.

On January 24 and 25, Farnbacher Loles Racing hopes to bring its Porche across the finish line first for the Children’s Tumor Foundation. The Rolex 24 is an endurance race where a team of five drivers will take turns logging laps for twenty-four hours.

During the race, live updates and interviews will be available at Racing4Research.com.

Speed Magazine has an article up about the effort.

Read the earlier post on the Lemon Drop X team from December 29.

On January 11, the Lemon Drop X team ran in the Walt Disney World Marathon. They raised $5000 for NF research.

After an 11-hour surgery to remove a life-threatening brain tumor, Aaron Brown is going home. The Southern Daily Echo has an update on his progress.

Remember the doodle donated by soon-to-be President Barack Obama for Neurofibromatosis, Inc’s Doodle Day fundraiser? It went in auction to Wayne Berzon of Chicago for $2000.00.

Now, Mr. Berzon is using the doodle to raise even more money for NF, Inc. You can purchase all kinds of items through his Cafe Press store.

Read more about his effort here.

Kelly Walters, mother of three-year-old Courtney, shares her family’s story with the UK Sentinel. Courtney was diagnosed at 18 months.

As of last year, the Jeneece and Friends Coin Drive has raised more than $1 million to benefit children with special needs. Jeneece Edroff, the creator of the coin drive, is now 14 years old.

The 2009 Coin Drive just started and will continue through Februrary 22. Organizers hope to make this their best year ever.

From an Indiana University School of Medicine press release:

Gleevec holds potential as first drug to successfully treat neurofibromatosis

Researchers at the Indiana University School of Medicine report that the anti-cancer drug Gleevec holds out promise to become the first effective treatment for neurofibromatosis, a genetic disease that has resisted treatments until now.

5:00 – 8:00 pm
Bubolz Nature Preserve
Appleton, WI

To benefit the Children’s Tumor Foundation.

Read about the family behind the event The Post-Crescent.

Rick Guidotti is a professional photographer from New York. In 1998, he founded Positive Exposure. This not-for-profit organization seeks to present the beauty and variety of genetic diversity.

Rick was at the NF, Inc. Midwest Symposium in October of 2008. His wonderful portraits are available for viewing on his website.