NF Smarty Pants

Archive for the ‘Children’ Category

Contrary to beneficial results in mice with NF1 related learning disabilities, researchers testing Simvastatin (found in the popular drug Zocor) did not find that the results duplicated in human trials. The Journal of the American Medical Association published their findings recently. Synopses and news story summaries are available at:

• US News and World Report
• Reuters
• MedPage Today

In five days, the Camp Sunshine will welcome its Children’s Brain Tumor Foundation campers for July. Thanks to Jenna’s Rainbow, all forty-two families will participate in the week-long camp free of charge.

CBTF will hold another camp in October. If your family is interested, please see their information page.

Colin Conners often missed high school classes due to his NF 1-related surgeries. With traditional schooling getting harder and harder to maintain, his family looked into the Hope Co-Op™ Online Learning Academy. He is graduating this year and is planning for college.

A British couple has used a procedure called PGD (pre-implantation genetic diagnosis) to make sure their child will not inherit his dad’s NF1 status. Doctors screened embryos in a laboratory and chose only those without the NF gene marker to plant during in vitro fertilization.

Parents can help their younger children understand NF by signing up for NF, Inc. California’s “Buddy Bear” service. Buddy is a teddy bear that travels for weekly stays with children with NF. He comes with a book, NF Buddies, that helps explain the disease.