May 20, 2005

MGH hosts neurofibromatosis symposium

The MGH, along with the New England Chapter of the Children's Tumor Foundation, hosted a medical symposium May 15 at CNY for people affected by neurofibromatosis (NF) and their families.

NF is a genetic disorder that affects one in every 4,000 babies born. It causes tumors to grow on nerves anywhere in the body — including the brain and spinal cord. The disease can lead to a wide range of complications including blindness, deafness, loss of limbs, chronic pain, paralysis, skeletal defects, cardiovascular problems and cancer. The disease affects people of all races and gender, and half of all cases
arise at random in families with no genetic history of NF.

The symposium featured two separate components, which ran concurrently: "Day at the Lab" was held for children ages 9 to 16. The event allowed children who are affected by the disease to visit MGH laboratories where NF research is conducted and gave them the opportunity to speak directly with researchers to learn about the studies. The children also gained hands-on experience as "scientists for the day."

The second component of the symposium was geared toward adults with NF. "Meet the Researchers," allowed participants to learn more about current issues, treatment and research into NF and also gave them the opportunity to talk directly with the researchers.

Young NF patients experience a "Day at the Lab."