“Imagine waking up one day to what feels like someone stabbing you repeatedly in the face, each strike more intense than the last — in your forehead, your jaw, your eye, your lips, your mouth.
Then the shocks start coming, what feels like volts of electricity coursing through one side of your face. And when the storm quiets, you’re left with a dull, aching pain that persists until the next attack, leaving you vulnerable to any trigger — a simple breeze, a light touch, a bite of food, a kiss from a loved one . . .”
That’s how life is described on a website that is raising funds for anyone suffering from Trigeminal Neuralgia (TN), a nerve disorder doctors classify as one of the worst pains known to mankind. Others simply call it “the suicide disease.”
Trigeminal Neuralgia strikes without warning. There are few truly effective treatments, and it is currently incurable.
Amy Tomasulo is a TN patient. Her husband, Pat Tomasulo, is a sports anchor and reporter on the WGN Morning News in Chicago. He is also a stand-up comedian. He and Amy are the geniuses behind Laugh Your Face Off (LYFO), an annual comedy night fundraiser to benefit the Facial Pain Research Foundation (FPRF).
The FPRF is the only foundation dedicated to raising money to fund research for a cure for TN, and they are getting close.
Each year in the past, LYFO was held as a live show in Chicago. Due to the pandemic this year, the 6th Annual LYFO went virtual. A live link was shared around the world, so others could learn about the disease and donate to the volunteer research foundation.
As the volunteer fundraising coordinator for the FPRF, I decided to host, along with my husband Bryan Sharp, an outdoor watch party at our home at Creekside Senior Estates. We borrowed an eight foot by eight foot outdoor projection screen, prayed for good weather, secured donations for a silent auction and penny auction, and held a 50/50 draw. And what a success it was! From my community alone, we raised $2,020. I am humbled by the generosity of my friends and neighbours here at Creekside Senior Estates.
At the end of the virtual show, Pat Tomasulo shared that during the live airing of LYFO, more than $300,000 in donations had been sent in. And the donations continued to arrive at the FPRF the following day.
What started out as a last-minute decision to keep the event going, despite the pandemic, ended up being our most successful fundraiser to date.
We are so grateful for everyone’s support. Anyone with a desire to learn more about TN, and how they can help keep our research for a cure going, is encouraged to visit www.facingfacialpain.org.
St. Davids resident Brenda Sharp, a sufferer of TN, is the support group leader for the Niagara Region and a volunteer fundraising coordinator for FPRF.