As a mother of a child with neurofibromatosis, Catherine Archer Gaston is embracing the opportunity to support the Neurofibromatosis Network and provide encouragement to other families impacted by the nervous system disorder. For the second year, the Adairsville resident will serve as the Georgia volunteer walk chairperson for the nonprofit’s Great Steps4NF benefit.
“In 2011, about one month after [EmmaGrace] was diagnosed with NF1, I received a phone call from the previous walk coordinator with the NF Network,” Gaston said.
“Honestly, I don’t remember if I had contacted them initially about any local support groups, a local walk or what, but I was asked if I would like to volunteer to coordinate a walk in my area. At that time, I was still so new to this ‘neuro’ word that flashed only the word ‘tumor’ in my head that I decided to decline.
“Long story short, last year I knew I had to get more involved with NF [neurofibromatosis] in a different way. A way that would help me cope with the ups and downs my child was experiencing so far, so that I could in turn, be a better mother to Emma vs. falling apart with every doctor’s visit or procedure and obsessing over and researching every new diagnosis for hours at a time. So, I contacted the NF Network’s walk coordinator and here I am, my second year as Georgia’s volunteer walk chair.”
Now 5, EmmaGrace was diagnosed with Neurofibromatosis type 1, also known as NF1, in August 2011 — one month and three days following her first birthday.
“She was diagnosed by ‘clinical diagnosis’ through the NF Clinic at Children’s Healthcare of Atlanta at Scottish Rite,” Gaston said. “What this means is, she was diagnosed by observation only, based on the required amount of characteristics needed for Type 1. In December 2011, NF1 was confirmed through blood work.
“Emma has had four years of long, exhausting trips to/from Atlanta, Marietta and Alpharetta to see numerous specialists, undergo MRIs, X-rays, ultrasounds and private therapies in Calhoun,” she said, adding her daughter had experienced delays with crawling and walking and presently has a tumor on her right optic nerve. “Currently, Emma is in kindergarten at Adairsville Elementary School and is doing absolutely amazing. The effects of having NF1 for Emma have not changed or altered her spunky, sweet and happy nature in the least bit. It has strengthened her in ways I never imagined. As for how her family and friends are affected by neurofibromatosis, we have all gained a new strength — that new strength is Emma.”
Occurring in towns across the nation, Great Steps4NF walks generate funds for NF research and help strengthen the ties of those impacted by the disorder. In Cartersville, the benefit — referred to this year as Glow4NF — will be held Saturday at Dellinger Park, 100 Pine Grove Road.
“These inspiring events create strong bonds that build a supportive NF community,” said Yvonne Glass, walk program coordinator for the NF Network. “The goal of these strong communities is to rally together and become one great voice in finding effective treatments and an eventual cure for NF. The walks are a great way to involve family and friends, meet others who are affected by NF, while raising awareness of this disorder and to create funding for NF research.
“Last year’s walk in Cartersville, Georgia, included 33 registrants and raised $5,256. We are hoping to have 100 people out this year and raise $10,000. When you participate in Great Steps4NF events, your fundraising dollars fuel our mission-related initiatives of support and research.”
Saturday’s Glow4NF will feature games; glow-in-the dark costume contest, T-shirts, face paint and necklaces; and barbecue provided by Bustin Butt Hickory Smoke BBQ.
Check in and activities will start at 6 p.m., with the walk kicking off at 7 p.m. Entrance fees will be $25 for adults, $15 for youth ages 4 to 10 and $6 for children 3 and younger. If a participant raises $100, registration fees will be waived.
“Neurofibromatosis … is a genetic disorder of the nervous system, which causes tumors to form on the nerves anywhere in the body at any time,” Glass said. “This progressive disorder affects all races, all ethnic groups and both sexes equally. NF is one of the most common genetic disorders in the United States — one in every 2,500 to 3,000 births. The neurofibromatoses affects more than 100,000 Americans; this makes NF more prevalent than cystic fibrosis, hereditary muscular dystrophy, Huntington’s disease and Tay-Sachs combined.
“Some of the symptoms of NF are tumors on and under the skin, learning disabilities, bone deformities, facial disfigurement, blindness, hearing loss, epilepsy, pain and cancer. The mission of the NF Network is to find treatments and a cure for neurofibromatosis by promoting scientific research, improving clinical care, providing outreach through education and awareness, while offering hope and support to those affected by NF.”
For more information about the NF Network and neurofibromatosis, visit http://www.nfnetwork.org. To register for the Glow4NF Walk, view http://www.nfnetwork.org/nf-happenings/great-steps/georgia-cartersville.