NF Smarty Pants

Archive for June, 2009

Congratulations to the hard working people who put together the Great Steps walk in Illinois. This year’s walk raised $140,000 for NF research and support programs. You can see photos from the event here.

I just discovered that the Children’s Tumor Foundation has started their own blog.

NF, Inc. California has decreed July to be Social Event Month. Contact them to plan and publicize an event in your neighborhood. As they say:

The publicity from these get-togethers often help[s] NF patients find others in their area. Although the genetic condition that brings us together can be a burden, the support found through being with others who understand NF helps us on our difficult days.

Greg, a 15-year-old with NF, is just one of the people the Daily Record wants to send to camp through their Operation Sunshine program. The money raised will turn into camperships for Camp Speers-Eljabar YMCA in the Pennsylvania Poconos.

The doctors haven’t given Jonathan Geurkink many days left. The Mille Lacs County Times has an article describing how dog therapy is enrinching his hospice care.

Lauren Loose is the daughter of a football coach at Lafayette College. Neurofibromatosis is just one of Lauren’s diagnoses. The Loose family started a charity football camp that draws upon the highly lucrative and competitive world of NCAA football recruiting to raise money for research.

In the meantime, the NCAA is trying to make things fairer with some new rules. One of these rules is inadvertently affecting the family’s fundraising efforts.

Sports Illustrated has a very interesting article on the situation.

Read an account of the most recent camp in May at Kean University’s site.

It’s the companion event to the original Great Steps for NF in Naperville, IL. It’ll be the same great spirit, same great goal! More information here.

We first heard about Tonderai Mandigumura in March when St. Joseph’s Hospital in Minnesota offered to removed the large facial tumor on the Zimbabwe man. Now, the main operations have been completed. Over the next few months, he will undergo additional procedures and medical care with the eventual goal of returning home to a more fulfilling life.

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.

This symposium on the University of British Columbia campus is free to families and has a $25 registration fee for professionals.

Download the registration form from the British Columbia Neurofibromatosis Foundation.