NF Smarty Pants

Archive for October, 2008

The Sacramento Bee covered Jodi Harrington’s arrival in its town. There’s a great picture of Josh Howell there.

Cherryland VFW Post
3400 Veterans Dr.
Traverse City, MI

$5.00 spaghetti dinner
Children three and under eat for free.
raffles, auctions, entertainment

The money raised will go towards travel expenses and medical bills for the Shepard family. Seven-year-old Madelynn is undergoing treatment for a tumor resulting from NF.

Scientists have learned that twenty-six gene mutations are likely in patients with the most common form of lung cancer. This number more than doubles what was previously known about genes associated with the disease.

Neurofibromatosis is among the newly identified genes.

Read about this story in:

• The LA Times
• Reuters
• Science Centric

Edward Johnson brought his story to the news media. This 53-year-old father of two works in the food industry. He believed that he was having a hard time finding a job because interviewers did not like the way he looks.

Here are three stories from:

• The Mail
• The Press
• The Mirror

After those stories ran, he was able to land a part-time job as he continues to search for a full-time position. Read the coverage by:

• The Press
• The Mirror

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.

Melisa Callison had a leg amputated as a result of complications with her NF. She now trains for and runs in marathons on a carbon-fiber leg. Read about her story in the Sacramento Bee.

Ashley Gankiewicz was diagnosed with NF1 before she was a year old. At the age of three, she developed an inoperable brain tumor. Now six, she’s been adopted by the Columbia University Womens Soccer Team through the Friends of Jaclyn Foundation.

ESPN has an excellent story about the teaming up of Ashley and the Lady Lions. Then read Bob Ettinger’s lovely commentary in the Star Beacon.

Irving Bible Church
2435 Kinwest Parkway
Irving, TX 75063

The registration deadline is October 24. This symposium is presented free of charge.

For more information, please access the pdf version of the brochure.

Cipriani
55 Wall Street
New York, NY 10005

The Children’s Tumor Foundation holds their annual benefit gala on October 29.

This year, 19-year-old Sammie Laux gained a new friend and helper. Dylan is a golden retriever from the Assistance Dogs of America. As a result of her NF2, Sammie is vision and hearing impaired. She also has some muscle paralysis and balance issues. Dylan assists her through her everyday activities. The pair hit it off so well that they have decided to help promote service dog programs in their local Ohio area.