NF Smarty Pants

Archive for the ‘Children’ Category

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.

Jeneece Edroff, a 15 year old with neurofibromatosis, will light Victoria’s cauldron and be a torchbearer in Canada’s torch relay festivities. Jeneece has raised over $1 million for research and support, and has her own charity organization called Jeneece Place.

Nick Folk, kicker for the Dallas Cowboys football team, is teaming up with the Children’s Tumor Foundation to raise funds and awareness. For every extra point this season, Folk will donate $25 to CTF. He will also donate $75 for every field goal. You can also get involved.

The Cape Cod Times features an article about the lessons to be learned from parents of children with chronic illnesses.

Camp New Friends is a summer camp for children with NF. Counselors and doctors will be on site to make sure that all campers are accommodated.

Many of the regional NF, Inc. offices have access to sponsorship money so don’t let financial fears prevent your child’s great adventure. Even though it is past the printed sign-up date, it never hurts to give them a call.

Kenya’s Daily Nation is reporting on the case of Stanley Badia. From the newspaper accounts, no one can be sure the eight year old has neurofibromatosis, but the confusion and frustrations felt by the family must be familiar to many NF families around the world.

Today, there are two follow-up stories.

• consulting a plastic surgeon
• pledges of support

The Diablo Valley Radio Flyers is hosting this event. Children attending will get to fly radio-controlled airplanes with an experienced adult mentor. How fun is that!?

Food, drinks, and entertainment will also be provided.

Download an informational flyer at NF, Inc. California.

Karen McDade is a third-grader with NF-2. Her cookie, the Chocklet Heaven, was chosen by Otis Spunkmeyer as the winner of a cookie creation contest.

The company will produce Karen’s cookie and sell it in schools around the country. Some of the proceeds will go to the Make-A-Wish Foundation.

As the Irish government cuts programs and school support, children with special needs are feeling the effects of decreased services.

The Limerick Post reports on the struggle of a family with two daughters who have special needs. One is diagnosed with NF.

The Taman Megah Handicapped and Disabled Children’s Home in Malaysia provides a home and services to children with disabilities, such as neurofibromatosis. They are trying to combine their scattered resources to be better able to care for their residents. Read about it in The Star.