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N.H. celebrates Neurofibromatosis Awareness Month

By Staff | Jun 1, 2019

Courtesy photo Emma Soos, 8, of Hollis, has Neurofibromatosis type 1. Here, she stands with a declaration of Neurofibromatosis Awareness Month in the office of Gov. Chris Sununu.

CONCORD – Gov. Chris Sununu recently signed a proclamation declaring May Neurofibromatosis Awareness Month.

On May 22, Sununu met with a small group of Neurofibromatosis patients and their families at the State House, spending time with attendees to learn how the condition has affected them or their loved ones. This included the family of 8-year-old Hollis resident Emma Soos.

Neurofibromatosis Northeast Executive Director Karen Peluso was on hand to thank the Governor for his support.

“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,” she said.

The meeting culminated with the governor wearing his #TheWordIs socks and posing with the group of children/teens affected by Neurofibromatosis. 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 the condition by promoting scientific research, creating awareness, and providing hope and support to those who are affected by it.

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

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