RI Residents Meet with Governor Raimondo for NF Awareness Month

Governor of the State of Rhode Island, Gina Raimondo, has signed a proclamation officially declaring May Neurofibromatosis Awareness Month. On Monday, May 13, Governor Raimondo met with a small group of neurofibromatosis patients and their families at the State House, spending time with attendees to learn how neurofibromatosis has affected them or their loved one.

Karen Peluso, Executive Director of Neurofibromatosis Northeast, was on hand to thank the Governor for her support saying, “Creating awareness of neurofibromatosis is the greatest challenge we face. Neurofibromatosis affects three times as many people as cystic fibrosis and muscular dystrophy combined yet most people have never heard of it. We are so grateful to the Governor for giving us this opportunity to spread the word.”

The meeting culminated with a photo of Karen Peluso presenting the Governor with a #TheWordIs t-shirt. The #TheWordIs campaign is part of an overall goal to spread the word neurofibromatosis across social media so that it is known in every household.

Neurofibromatosis is a neurological genetic disorder that can cause tumors to form on the nerves anywhere in or on the body at any time. Only 50% of those affected have a prior family history of neurofibromatosis, and 50% of the cases occur as a spontaneous mutation. At this time scientists have identified 3 types of neurofibromatosis: NF1, NF2 and Schwannomatosis. Neurofibromatosis affects all races and sexes equally and may be associated with deafness, vision impairment, epilepsy, learning disabilities and cancer. Neurofibromatosis has no effective treatment or cure.

The mission of Neurofibromatosis Northeast is to find a cure and treatment for neurofibromatosis by promoting scientific research, creating awareness, and providing hope and support to those who are affected by neurofibromatosis.

To learn more about neurofibromatosis or to make a donation, visit the Neurofibromatosis Northeast website at https://nfnortheast.org/.

Pictured in the photo are:
Back row (left to right): Tony Di Bella, Marjorie Ball Di Bella, Erin Sartini, Jennifer Brickley, Jon Canela and Walter Steenbergen
Front row (left to right): Damian Sartini, Governor Raimondo, Karen Peluso and Jeff Littlefield