Team Tommy has launched Operation Valentine. The friends and family of 4-year-old Tommy Joffrion have banded together to make and deliver cupcakes this Valentines Day.
If you are in or around Leominster, MA, how about sending some good-cause cupcakes to a loved one? They stop taking orders on February 10 so check them out quickly! The Leominster Champion has some great photos.
There’s a charity auction where the winner will get a chauffeured Rolls Royce Silver Cloud for a night. Come on, Chicago people. How cool is that!
Thank you, Diana Haberkamp of NF, Inc. Midwest, for letting me know that this site was hacked. I hope no one was spirited away to somewhere really gross. I believe I have cleared the malicious code, and I hope everything is back to normal now.
NF, Inc. Midwest’s Great Steps for NF is proving to be a very popular fundraising model. The original event began in Naperville, IL, and grew to include a second charity walk in Effingham, IL. Now organizers in Madison, WI, want to add onto the tradition.
If you are in the Madison area and would like to get involved, please contact the main office of NF, Inc. Midwest.
Kyle Dobbins is legally blind due to his NF. Scientists in China are using a procedure involving stem cells to restore sight. Read more details from KGET.
Led by the Genetics Department of the University of Birmingham, researchers found that NF1 and Legius syndrome have very similar symptoms, which may lead to misdiagnosis.
Lisa Nancarrow has a painful and deadly tumor in her abdomen. Her Ontario doctors are out of options. Lisa struggles against her country’s health care system to receive care at the Mayo Clinic in Minnesota.
The Canadian Press has a nice, lengthly educational article on NF.
A group of scientists studying mummies have determined and diagnosed a wide range of maladies. One ancient Egyptian is likely to have had NF. The disease is likely the cause of death.
Instead of getting the usual presents at his bar mitzvah, Aaron Posner will raise money for NF research. He is asking for donations to the Washington University Neurofibromatosis Center in St. Louis.
