NF Smarty Pants

Archive for the ‘Uncategorized’ Category

I hope you all had a great holiday season. May 2009 be filled with joyful news and important advancements in NF-research.

Wayne Berzon of Northbrook, Illinois, bought President-Elect Barack Obama’s National Doodle Day doodle for $2075 last year. Now, the piece has obviously become more valuable as a collectable. Mr. Berzon, however, says he’s not selling.

This past week, two prominent business people and NF advocates have been in the news.

• Here’s an interview with Lou Congelio. In addition to being an advertising executive, Mr. Congelio is also the president of the Just Ask Foundation.
• Jill Tokunaga was recently named VP of Sales for The Gas Company LLC. She is an active participant in the NF effort in Hawaii.

NF-Mid-Atlantic Office
8855 Annapolis Road, Suite 110
Lanham, MD 20740

All are welcome.

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. 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.

The Denver Business Journal and the National Association of Women Business Owners presented Sherry Comes, Founder of CoffeeCakes.com, with the “Outstanding Women in Business” award. The award recognizes Denver businesswomen who have made significant contributions to the local business scene and the community.

CoffeeCakes.com donates a portion of every sale to NF, Inc. The company is also a long-time supporter of the Children’s Tumor Foundation.

Sherry’s son Sebastian was diagnosed with the disease in 2005.

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.

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