May is neurofibromatosis awareness month. Neurofibromatosis (NF) occurs in one in 3,000 individuals and causes tumors to grow on nerves throughout the body. NF is more prevalent than cystic fibrosis, Duchenne muscular dystrophy and Huntington’s disease combined. NF can arise in any family, regardless of race or ethnic origin. Roughly half of all cases arise in families with no history of the disorder, as in the case of my 6-year-old daughter Holly.
The Alaska Chapter of the Children Tumor Foundation is happy to announce that there will be a neurofibromatosis symposium on May 19 at Providence Alaska Medical Cancer Center. The objective of the NF symposium is to provide information about advances in NF research and offer practical advice on issues facing patients and families living with the disorder. Individuals from all around our great state of Alaska will be gathering for this free event. Speakers include: Roderick L. Smith, M.D., Steven Baker, M.D., Merlin Hamre, M.D., and Robert Arnold, M.D. To find out more information and to register for this free event go to http://www.ctf.org/.
— Carrie Beeman