NF Smarty Pants

Archive for August, 2008

Last May, we wrote about how Jessica Stone was sharing her final days as a person with hearing through video diaries. Her surgery to remove a life-threatening brain tumor would also take her hearing. Yesterday, Good Morning America featured her and her family on their program.

You can see the complete tv segment and read a text update on ABC’s website. Her local tv station, WZZM, is also reporting international interest in her story.

Face transplant surgeries are certainly in the news these days. The Times has a detailed article describing the stages and processes of this amazingly high-tech operation.

In 2007, French doctors completed an almost complete face transplant operation on Pascal Coler, who had facial tumors related to his NF1. This and other similar surgeries are giving surgeons a lot of information about the procedure.

Amy and Beth Nakatsuka are identical twins with NF. They’ve battled learning difficulties and confused schools to graduate as co-valedictorians of their new high school, Las Flores High School.

Benefit4Kids is a wish-granting organization that arranges special outdoor experiences (camping, fishing, hunting, etc.) for children under 18. Read about how they put together an Alaskan fishing trip for Nick Wallace and his family.

St. Paul Lutheran Church is having an ice cream social to raise funds to benefit NF, Inc. Kansas. For more information, please contact NF, Inc.’s office at 800-942-6825.

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.

This Saturday, anyone with a horse is welcome to join in the trail ride and dance at the Zero Brahman Ranch (2388 Burma Road) in Thibodaux, Louisiana. The Dusty Riders are sponsoring the event as a fundraiser for Heidi Kilgen, a 15-year-old with NF2.

Registration starts at 1:00 with the ride beginning at 2:00. The cost is $15, which includes the approximately three hour ride and a dinner ticket. Non-riders can attend the post-ride dinner and dance by purchasing the food at that time.

Researchers at the Washington School of Medicine in Saint Louis announced that their experiments show the mutated NF1 gene (which causes the disease neurofibromatosis) affects the quantity of an important signaling molecule called cyclic AMP (cAMP). In mice trials, lower levels of cAMP resulted in smaller mice. This may help explain why people with NF are often shorter than the average population.

Tyler Whitmore is a 14-year-old teen with NF1. A New Jersey newspaper, The Express-Times, profiled him and his family.