NF Smarty Pants

Archive for December, 2008

The Hungry Horse News ran a family profile on the Morgan family of Montana. Daughter Jazmyn has NF. The family’s older daughter, Joslyn, has Kawasaki disease.

Even though the family has already faced and will continue to face so many medical challenges, they remain thankful for what they have.

Yvonne Foong, now 22, is a popular blogger and tireless advocate of NF awareness in her native Malaysia. During a recent tumor-removal surgery, they discovered that she had an inoperable tumor that if left alone will take away her vision. She is now remobilizing to raise the funds for this new procedure.

The six members of the Lemon Drop X running team got together out of a desire to get in shape. They decided to shoot for the Walt Disney World Marathon on January 11.

Through the help of their trainer, they decided to join the Children’s Tumor Foundation’s marathon fundraising effort. By dedicating their run to four-year-old Celia, an area girl with NF, they hope to make their run even more meaningful and fulfilling.

Artist Michael Murphy feels inspired by Barack Obama. He is working on a series based on the President-Elect’s image.

This assistant professor at Georgia College and State University is using the attention and sales raised by his artwork to help his friend Ed Port. Ed’s NF2-related tumors have led to major facial distortions that affect his quality of life.

The December 2008 edition of Her Life Magazine features a cover story on Julie Hanson. You can access a free PDF version of the magazine from their website.

Julie’s son Jeff has NF. Through his artwork, they both raise money and awareness for neurofibromatosis.

Researchers from Rice University announced that they believe they have uncovered a crucial root to epilepsy, autism, schizophrenia, and other neurological disorders. Initially, they were researching neurofibromatosis before making this inadvertent discovery.

Jessica Stone has a new blog. You can continue to follow her story at Life Inspires Me.

Saturday, December 6
Regency Fairfax Theater
7907 Beverly Blvd.
Los Angeles, CA

Inspired by Gillian, a fansite for actress Gillian Anderson, is hosting a double-screening this Saturday. The first and second The X-Files movies are featured. Special guest Executive Producer Frank Spotnitz is scheduled for a brief 30-minute question and answer at the event.

All of the proceeds from the screenings will go to Neurofibromatosis, Inc. To buy your tickets and get more information, please go to their X-Files screening page.

December 13
Holidays Around the World
11:00 to 2:00
Courtyard by Marriott
Vacaville, CA

A social arts and crafts event for teens.

December 6 at 2:00 in Hudsonville, MI. Contact the Support Group of West Michigan for more information.