NF Smarty Pants

UK National Doodle Day

It’s that time of year again. March 5 is the UK’s National Doodle Day.

Nikirah Goddard’s Retroactive Benefits to Help Others

Nikirah Goodard passed away in 2008, but the retroactive benefits approved to go to her mother will help other children with NF. One of the ways Ms. Goodard intends to pass along the money is by sponsoring a new camper for Camp New Friends each year.

Cupid’s Undie Run Brings Exposure to NF

By all accounts, yesterday’s Cupid’s Undie Run was a very successful event. The snow and cold of Washington DC didn’t stop the runners from making their loop around the Capitol building. Pictures of the event are available at the DCist. The fundraiser benefited the Children’s Tumor Foundation.

Illinois Walking Teams Raise Funds For Great Steps

Walking teams have a great time at NF, Inc. Midwest’s Great Steps events. Team pride, friendly competition, and great prizes drive each team’s fund-raising efforts. If you are in the area, please consider supporting these events:

• Feb 15—The A Team hosts a night of fun at Jump!Zone (6374 W Howard, Niles). 6:00 to 8:00 p.m. $15 for each child ages 2 and up. Adults are free.
• Feb 15—Jacob’s Warriors invite you to eat wings on this day. Bring this ticket to Buffalo Wild Wings (1550 Douglas Road, Oswego) and 15% of your order will be donated.
• Feb 20—4Kate is going bowling! Everything kicks off at 9:30 p.m. at the Orland Bowl (8601 W 159th Street, Orland Park). $35 per person for 4 games of bowling and food. Call Vikki (708-829-0718) to register.

Team Tommy Fights NF with Cupcakes

Team Tommy has launched Operation Valentine. The friends and family of 4-year-old Tommy Joffrion have banded together to make and deliver cupcakes this Valentines Day.

If you are in or around Leominster, MA, how about sending some good-cause cupcakes to a loved one? They stop taking orders on February 10 so check them out quickly! The Leominster Champion has some great photos.

Ride in a Rolls Royce For A Night

There’s a charity auction where the winner will get a chauffeured Rolls Royce Silver Cloud for a night. Come on, Chicago people. How cool is that!

NF Smarty Pants Hacked!

Thank you, Diana Haberkamp of NF, Inc. Midwest, for letting me know that this site was hacked. I hope no one was spirited away to somewhere really gross. I believe I have cleared the malicious code, and I hope everything is back to normal now.

NF Event in Madison, WI, Looking for Volunteers

NF, Inc. Midwest’s Great Steps for NF is proving to be a very popular fundraising model. The original event began in Naperville, IL, and grew to include a second charity walk in Effingham, IL. Now organizers in Madison, WI, want to add onto the tradition.

If you are in the Madison area and would like to get involved, please contact the main office of NF, Inc. Midwest.

Controversial Stem Cell Procedure May Restore Sight

Kyle Dobbins is legally blind due to his NF. Scientists in China are using a procedure involving stem cells to restore sight. Read more details from KGET.

Is it Legius Syndrome or NF1?

Led by the Genetics Department of the University of Birmingham, researchers found that NF1 and Legius syndrome have very similar symptoms, which may lead to misdiagnosis.

• read the Journal of the American Medical Association abstract
• read an easier-to-understand article