Governor Supports Neurofibromatosis Awareness Program
Augusta, ME ‚Äď Governor John Baldacci recently met with Maine families to sign an official statement proclaiming May as Neurofibromatosis (NF) Awareness Month in Maine. Baldacci joined five New England Governors in supporting NF, Inc., NE in their campaign to create awareness about this formidable disorder. In attendance for this special occasion were Yvonne Batson of Fairfield, her son Nathanael; Patricia Ricker of Lyman and her children Daniel and Natalie; and Amy Fitzpatrick of Bath.
Neurofibromatosis (pronounced neuro-fibroma-tosis) is a genetic disorder that causes tumors to grow anywhere along the body‚Äôs nerves at any time. NF affects more people than muscular dystrophy and cystic fibrosis combined, and has been linked to learning disabilities, seizures, deafness, brain tumors, vision impairments and cancer. Not all patients suffer the most severe symptoms, but at present, there is no means of prevention, no effective treatment and no cure for neurofibromatosis.
‚ÄúLiving with NF does not have to be the end of the world‚ÄĚ said Yvonne. ‚ÄúIn my family I have seen a full range of complications, from learning disabilities to cancer. However, because of the hard work and research, we now know so much more about NF. When I was a child hardly anyone knew what NF was, let alone how to treat it. Today, I have so much hope for my children and the treatment that is now available‚ÄĚ said Batson. Batson, who has neurofibromatosis, has three children also affected by NF.
The mission of Neurofibromatosis, Inc., Northeast is to find the cure and treatment for neurofibromatosis by promoting research, creating awareness and providing hope and support to those who are affected by neurofibromatosis. NF, Inc., NE is a resource for patients, families and physicians throughout the northeastern United States. To learn more about neurofibromatosis, visit the NF, Inc., NE website at www.nfincne.org.
Contact Name: Marsha Smith
Telephone Number: 781-272-9936