Neurofibromatosis (NF) is among the most common neurological disorder caused by a single gene; occurring in 1 of every 3,000 births – yet most people have never heard of it.
“Our organization’s challenge is to bring NF into the forefront of the conversation. That is why our annual Walk in the Wild event is so important. Events like this help create awareness for Neurofibromatosis in our local community,” says Wanda Harper, President of Neurofibromatosis Clinics Association (NFCA).
The disease is characterized by the growth of tumors in the nervous system. These tumors can occur just under the skin or deeper within the body – in the supporting cells that make up the nerves, and sometimes along the spinal cord or brain. There are three types of neurofibromatosis: NF1, NF2 and Schwannomatosis, each with different signs and symptoms. Those diagnosed with a form of NF may have concerns about their appearance, suffer from neurological problems or experience problems with vision, hearing, skeletal or cardiovascular issues. Symptoms can be serious and life altering.
“Many of the families we see here at Children’s Hospital are struggling with understanding the implications of this diagnosis not only for their child, but their family as well,” says Sinikka Davis, an NF social worker available through Children’s Hospital of Pittsburgh, funded by NFCA. “Learning how to navigate a specialized medical system can be confusing because NF has such a wide variety of symptoms. Additionally, if children have learning or developmental issues, that adds another whole system to learn to navigate in order to obtain the services needed,” said Davis. “It can be overwhelming for families. Having assistance with a specialized social worker can be a life line. It is a unique service but one example of a vital one the NFCA funds to serve NF patients and their families.”
The organization, a local non-profit, acts as an information resource for patients, their families and local healthcare professionals. They also provide NF camp, and college and tutoring scholarships for Western Pa NF families.
“We are so grateful for the wonderful support shown by the people who are willing to come out year after year – regardless of the weather,” says Wanda. “On behalf of the families who wade through the complicated NF “jungle” each day, THANK YOU. These generous participants are truly helping the NFCA to not only invest in research in hopes of finding a cure for NF, but to also provide vital support services.”
The fundraiser brought out more than 500 walkers including former Steeler linebacker, Andy Russell who serves as honorary chair of the event. “Sam Zacharias and I have done this for 8 straight years and loved it,” says Russell. “The Rooney Family taught us that it’s important to give back to the community, inviting us to participate in many different charitable efforts. One of our most important charitable efforts every year is the NFCA.”
Mark your calendar now for the NFCA’s 6th annual Bowling over NF event on Sunday, July 17th at Paradise Island Bowl. Tickets are $20.00 per adult and $10 for youth twelve and under. For the golfers, mark your calendars for The 2016 NFCA Golf Scramble on Friday, August 5th, 2016. Information on both of these events can be found on the Events tab of the NFCA’s website, www.nfpittsburgh.org.