Locals came out in force, ‘teeing’ it up for a special mission – improving the quality of life for people living with Neurofibromatosis (NF). On Friday, August 5, more than seventy golfers gathered at Lindenwood Golf Club for the 2016 NFCA Golf Scramble. The fundraising event helped to support critical services provided by the Neurofibromatosis Clinics Association (NFCA), a regional organization dedicated to raising awareness about Neurofibromatosis (NF), a progressive genetic condition. Their mission focuses on maximizing the quality of life for people diagnosed with NF and their families by funding clinical services, family programs and research to improve NF treatment and management.
Foursomes enjoyed 18 holes on Lindenwood’s greens and lunch before joining additional guests for a buffet dinner and short program which featured door prizes, a 50/50 raffle and an auction featuring libations, sports memorabilia, golf items and dining packages. Highlights of the evening included skill prizes for longest drive and closest to the pin. NFCA golf shirts and $25.00 gift certificates to Lindenwood’s Pro Shop were awarded to the winning foursome.
The event is held in memory of former NFCA Executive Director, Ann Kramer, who passed away in 2004. The NFCA Board of Directors and 2016 NFCA Golf Scramble event chairs, Bill and Jeff Kramer, were quick to continue Ann’s legacy within the organization. “Ann’s commitment to helping NFCA families was life long,” said Bill Kramer. “From her work in trying to advance research and NF treatments, to ensuring the NFCA could continue to provide services beneficial to NF patients and their families. Ann was an inspiring reminder to all of us of the footprint each one of us can leave to help so many.”
NF, a genetic neurological disorder, is classified into three distinct types; neurofibromatosis type 1 (NF1), neurofibromatosis type 2 (NF2), and a rarer form called Schwannomatosis. Although many don’t recognize the disease name, it does affect more people than Cystic Fibrosis, Muscular Dystrophy and Huntington’s Disease combined.
NF1 occurs in one out of every three thousand children born causing tumors, or neurofibromas, to grow along the body’s nerves or on or underneath the skin. Symptoms vary with each form of the disease, ranging from mild to severely debilitating. NF1 also has a connection to developmental problems, especially learning disabilities, which are five times more common in the NF1 population than in the general population.
To better serve NF families, the NFCA created the Ann Kramer Education Fund for tutoring services to benefit children with NF, grades 2-12, demonstrating learning disabilities and financial need.
“The generosity of these golfers contributes to the viability of our programs – providing social services for 20 years, tutoring, and post-secondary school scholarships for the last 13 years,” said Joyce Trew, NFCA Executive Advisory Board Member & Treasurer. “We are overwhelmed each year with their dedication to support this event and as an all-volunteer organization, we truly feel appreciated and respected for the programs we provide. These are the dreams of our founder, Cornell McMullin, becoming reality. Her son (diagnosed with NF2) worked with me and that is why I have been involved for over 30 years.”
“I honestly cannot imagine a better group of people than the ones who support our objectives by showing up at our events – be it the Walk in the Wild, the Bowling Over NF, or this golf outing,” said Wanda Harper, NFCA Board President. “As I say over and over again – We cannot do anything without them! Thank you so much!”
If you know someone diagnosed with NF, encourage them to reach out to the Neurofibromatosis Clinics Association (NFCA) to learn more about the valubale support that can be offered them. Additional information can be found by visiting their website at http://nfpittsburgh.org/