NF Smarty Pants

Archive for March, 2009

Doctors at St. Joseph’s Hospital in St. Paul, Minnesota, have offered to help Tanderai Mandigumura, a 22-year-old Zimbabwe man with a disfiguring facial tumor. From the preliminary information, Mandigumura may have neurofibromatosis.

The Children’s Tumor Foundation is holding its National Patient and Family Medical Symposium from April 3rd through the 5th in Washington DC. Please click on the link for more details and registration information.

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.

Eat well and help NF, Inc. Northeast at the same time. For more information, please see their website.

Dining Out In Dallas is the Texas Neurofibromatosis Foundation’s signature event. Since 1995, Dallas’s top chefs have come together to support NF research and services.

It’s not too late to join the walkers raising funds for NF, Inc. California tomorrow. This 5K walk/run will also have plenty of activities for the entire family.

Dr. Thomas Roland and Dr. William Shapiro will give a presentations on NF2 hearing issues in New York tomorrow. Please see the details at the NF2 Crew’s page and RSVP to attend.

Bill Simonson believes the Big East is overrated in the rankings for the NCAA Basketball Tournament. He thinks the Big Ten teams will win more games than the Big East teams overall.

And, as he says, he’s willing to put his money where his mouth is. From his article:

I challenge people to take sides in this battle of the Big East and the Big Ten. Pick a side, pick which conference will win more games. If you lose, please make a donation in your name to the fight against neurofibromatosis.

Click on his name above to read the entire article.

Dutch scientists have developed a way to find microdeletions in DNA sequences. Their study, published in the journal Human Reproduction, specifically names NF1 predisposition as one of the conditions that their technique can discover in embryos. Read more at the following links:

• the press release
• MedPage Today
• The Great Beyond

The Study of the Natural History of Neurofibromatosis Type 1 from the NCI Center for Cancer Research is seeking participants. From the study’s description:

To expand our understanding of NF1, researchers are conducting a long-term study of children and adults with the condition and their healthy siblings. They hope that by studying patients and siblings over time they can learn how the disease progresses and how to better detect and treat its symptoms.