SamJam to raise money, awareness for Neurofibromatosis
By Tom Emery
Twelve hours of some of the finest progressive bluegrass in the Midwest will be on display at SamJam 2016 at the Macoupin County Fairgrounds on Saturday, Sept. 17.
The event will raise funds and awareness for neurofibromatosis (NF), a genetic disorder that disturbs cell growth in the nervous system and causes tumors to form on nerve tissue, including the brain, spinal cord, and nerves. Since its introduction in 2014, SamJam has raised $35,000 for NF.
Presented by SamJam4NF, Inc., a local non-profit organization, and Schafly Brewing of St. Louis, the event honors Sam Oswald of Carlinville, who has endured a host of treatments related to NF over the last 26 years. SamJam benefits NF Midwest, an organization dedicated to raising funds for NF research and supporting NF patients and their families in a six-state area.
In his fight against NF, Oswald has undergone spinal fusion, two brain tumors, shunt revisions, bone grafting on both legs, knee surgery, dermal tumor removal, and eye surgery. More recently, he completed two surgeries for a rare tumor in his leg, including radiation and chemotherapy. He is left with a lower leg that no longer functions.
“I’ve dealt with NF for my entire life and have quite a few problems,” said Oswald, 31. “It hasn’t always been easy, but it’s something you just have to work through. Thanks to the great support of family and friends, I’ve been able to bounce back from what NF threw at me, so far.”
SamJam is highlighted by a music lineup of bluegrass, folk, and Americana that includes six bands from across the nation. They include The Hillbenders from Springfield, Mo., and NewTown of Lexington, Ky., as well as the River Kittens from St. Louis.
Other acclaimed performers at SamJam will include The Dust Covers, an acoustic quartet; Deep Hollow, a trio; and ClusterPluck, a crowd favorite in previous appearances at SamJam.
Food and beverages, including a craft beer and winery selection, will be available throughout the event, which will also feature a silent auction and a raffle for a Caribbean cruise. Gates open at 11:30 a.m. for the event, which will be held inside the Bates Building on the fairgrounds.
Neurofibromatosis, which affects one in every 2,500 people worldwide, is often diagnosed in childhood or early adulthood and appears equally across sexes, races, and ethnic groups. Patients routinely suffer from tumors on nerves anywhere in the body, and several separate, distinct versions of the disorder are currently classified
“As Sam’s dad, I remember the years of surgeries, doctor and hospital visits, and the ongoing dread of what might happen next,” said Pete Oswald Sr., who has spearheaded the SamJam events. “Over the years we have met many other families that are going through similar journeys following an NF diagnosis. Now, with Sam’s help, we want to make people more aware of this devastating condition.”
Oswald Sr. adds that NF symptoms can vary from patient to patient, “but always present a healthcare dilemma for the patient and the patient’s family. Greater public awareness and increased funding for research will help find a cure and better treatment for NF related health issues.”
Though less familiar to the general public, more people suffer from NF than from muscular dystrophy, Tay-Sachs, and Huntington’s disease combined.
Tickets for SamJam are available online at samjam4nf.com. Ticket prices are $25 for adults or $10 for children 12 and younger. Earlybird tickets for $20 are available online until Sept. 1. For more information, visit the event website or call (217) 556-4917.
“Everyone needs to understand what NF is. It’s not contagious and it affects everyone differently,” said Sam Oswald. “But, it is fairly common—more than most people think. We started SamJam to raise money for NF research and patient service and I hope everyone can come to SamJam and enjoy some great music for our cause.”
Tom Emery is a freelance writer and historical researcher from Carlinville. He may be reached at 217-710-8392 or firstname.lastname@example.org.