NF Smarty Pants

Archive for February, 2009

The Kansas newspaper The Morning Sun has a story about Cheyenne Batchelder. This six year old had extremely thin bones in her right leg as a result of NF. Eventually, the leg had to be amputated.

She now is in the process of learning to master her new prosthesis.

Researchers at the Washington University School of Medicine announced that they have made inroads into answering the question of why brain tumors grow in certain regions and not in others.

This Friday, February 27, is National Doodle Day UK. A HUGE amount of celebrity doodlers are participating this year, including such notables as Gillian Anderson, Ken Follett, Ricky Gervais, Daniel Radcliffe, and Steve Winwood.

The eBay auctions for these doodles will go live on Friday. The funds will benefit The Neurofibromatosis Association and Epilepsy Action.

Since I’m a huge fan of the relaunched Dr. Who series though, I’d have to go with this Terry Molloy one as my favorite.

Alexis “Ali” Didier from Bolingbrook, IL, is going to Disney World thanks to the Make-A-Wish Foundation. Recently diagnosed in 2007, Alexis has jumped into the campaign to fight NF. She and her family will participate in an upcoming NIH study.

They will also walk in NF, Inc. Midwest’s Great Steps fundraising walk this year.

Alexis’s Girl Scout troop joins the effort by selling wristbands and lip balm.

The Boys and Girls Club of the Flathead Reservation and Lake County awarded Wade Burland their Youth of the Year Award. Wade has a NF-related tumor growing in his brain stem and down his spinal cord. The tumor restricts his height, which the family hopes to combat through medical treatments.

Lisa Singleton has NF. She has already climbed the Sydney Harbor Bridge once before. This February, she plans to return to climb it again. This time, she’s doing it in honor of her neighbor Jean Williams, who passed away from motor neurone disease.

The Steiner Family (Jodie, Chaun, Braeden, and Bronson) are featured in the Toledo Free Press.

Kirsty Ashton, 18, was surprised at school by a star of her favorite soap opera. Ricky Whittle was there to let Kirsty know that she had to prepare for an upcoming scene in the British TV show Hollyoaks.

Kirsty has NF and has written a book and keeps an online diary about her experiences. She’s also a champion fundraiser.

The Staten Island Advance has a great extended article on the White Family and neurofibromatosis.

The Midwest chapter of NF, Inc. is holding two planning meetings this Saturday.

NF Action Group (NAG)
10:00 aAM

NF2 Action Committee
12:00 PM

Location: NF, Inc. Midwest’s office
145 S Main
Lombard