NF Smarty Pants

Archive for July, 2009

If your family still needs summer vacation plans, check out the NF Gathering at Cedar Point. August 28-30. Sandusky, OH.

Ashley’s Ride, a motorcycle benefit, drew hundreds of riders last year. This year, the ride kicks off at 10:00 in Mancelona, MI.

President Obama’s nomination for the new Director of the National Institute of Health has strong scientific credentials and a tight connection to neurofibromatosis research.

Previously, Francis Collins lead the Human Genome Project and his work helped identify the genetic causes of neurofibromatosis, cystic fibrosis, and several other diseases and conditions.

Collins, however, is also publically known as a staunch Christian. He believes in God and God’s role in evolution.

This background is causing a lot of discussion among and between the science and religion camps. Collins’s nomination has been met with applause, confusion, and a certain amount of worry.

• Los Angeles Times
• Media Newswire
• New Scientist

The Summers-Mannion family of Teesside, England credits Zoe’s Place, a baby hospice facility, with helping them through the difficulties of caring for a son with NF. The Gazette has their story.

PTC Therapeutics Inc. received $.82 million from the Department of Defense further their research into a drug treatment for NF2. Drug candidate PTC299 is ready to go into Phase 2 clinical trial.