The Middletown Press (Middletown, CT)
Steps2Cure walk participants honor teen
WILLIMANTIC — The Steps2Cure NF Walk at Jillson Square Saturday honored a number of individuals living with ne uro fib roma to sis, including one Haddam girl diagnosed at 8.
The walk provides an opportunity for ne uro fib roma to sis patients, families and friends in the Connecticut area to come out to support Ne uro fib roma to sis Northeast and create awareness. The event featured music, raffles, barbecue lunch, face painting and kids’ activities and dancing, according to a press release.
Ne uro fib roma to sis is a genetic disorder of the nervous system that causes tumors to form on the nerves anywhere on the body at any time and affects three times as many people as cystic fibrosis and muscular dystrophy combined, according to Ne uro fib roma to sis Northeast.
Rebecca Donkor took part in the event on behalf of her family’s NF Hero Emma Becker. Ne uro fib roma to sis is a genetic disorder of the nervous system that causes tumors to form on the nerves anywhere on the body at any time and affects three times as many people as cystic fibrosis and muscular dystrophy combined, according to the press release.
Emma’s family was referred to neurology because of multiple café-au-lait spots on her body. “An MRI was ordered due to her headache symptoms, where we discovered she had a golf ballsize tumor on her optic nerve, along with a cyst and tumor on her brainstem. Emma has been receiving chemotherapy for the past three years and has had a brain surgery to remove the cyst,” Donkor said in a prepared statement.
“Emma is in seventh grade, she loves to bake and is a cheerleader for our youth football league. Emma gets great joy out of helping other children on similar journeys like her, and hosting many fundraisers, such as Halloween costume drives and making goody bags for children that are in the hospital on Halloween. She has also done Christmas toy drives and has collected over 10,000 containers of play clay as well as over 6,000 pairs of socks for a children’s hospital,” Donkor said.
There is currently no cure for NF. Emma will need to be continually monitored for tumor growths and need to continually see NF specialists throughout her life, according to the release.
Proceeds from the Windham County walk will support the programs of Burlington, Massachusetts, based nonprofit Neurofibromatosis Northeast. Funds raised will make it possible to invest in neurofibromatosis research at premier scientific institutions, including the Center for Human Genetic Research at Massachusetts General Hospital and will help the organization assist the many families dealing with neurofibromatosis by providing information and support, according to the release.
Money raised will also provide college scholarships for students who have neurofibromatosis to continue their education after high school, the release said.
Neurofibromatosis Northeast’s mission is to find a treatment and the cure for neurofibromatosis by promoting scientific research, creating awareness and supporting those who are affected by NF. For information, visit nfnortheast.org.