Jeff Heuchert email@example.com
In a surprise announcement Friday morning, the board of directors for Epilepsy Huron-Perth announced the dissolution of the local charity at year's end, citing the "overwhelming challenge to raise enough funds to sustain the core programs and services" as the primary reason.
The organization, which has served the community for more than 20 years by providing support, education, and community awareness about the disorder, has fallen on hard times in recent years, says board member James Arnold.
Funding to the organization from the United Way Perth-Huron was reduced three years ago, and since then the charity has struggled to come up with other stable revenue streams. Arnold says the board feared its funding would be cut entirely next year, so its members came to the difficult decision after about six months of discussions to shut down operations.
"At the end of the day it's disappointing, but we exhausted every avenue (before deciding to close)," he adds.
According to United Way executive director, Ryan Erb, Epilepsy Huron-Perth was placed on the United Way's defunded list due to concerns about its long-term sustainability, both in terms of financial and volunteer support. He would not elaborate on any other areas of concern the United Way had with the organization, citing confidentiality.
Funding to Epilepsy Huron-Perth was cut to $30,000 from $45,000 for a three-year period. During that time the United Way worked with the organization to find long-term funding that would give Epilepsy Huron-Perth some stability - and the United Way some flexibility with its own dollars. But in the end, not enough progress was made.
"We've been communicating with them and working with them very hard these last three years to turn things around,” Erb says. “The idea was to try to help them and not make things worse. And I think in our efforts to do that we forced them to try to address some difficult things. They tried, but in the end they found they couldn't sustain things.
“There are a lot of good things out there to support, and certainly Epilepsy (Huron-Perth) has been a good partner for a long time,” he adds. “But we need to invest in things that are sustainable.”
Epilepsy Huron-Perth had already taken steps to trim its budget, including closing its Seaforth office a few months ago, leaving executive director Andrea Longstaff, whose job will be terminated at the end of the year, to work from home.
But the charity’s troubles weren’t only related to funding. Arnold says community interest appears to have waned in recent years, noting the board has struggled to keep a full complement and fewer people are donating. This year’s annual Glad Days campaign, while still a success, fell about $6,000 short from last year’s.
The lack of interest in the board has also made organizing fundraisers more difficult, Arnold says, noting past events like a ball game and golf tournament were not even held this year.
With a client list of approximately 300 families, there’s no doubt the loss of the organization will be felt in the community. It will be business as usual, however, until January, at which point the organization is asking families to call 1-866-374-5377 to be directed to the nearest epilepsy support office. Additional support can also be found at www.epilepsymatters.com.
Arnold says it is the organization’s goal to continue to support the Boyd Devereaux Youth Sponsorship Fund, which this year awarded two students with $500. The fund was started by the Seaforth-born former NHL player a few years ago with the money we won as a contestant on CBC’s Battle of the Blades. Devereaux’s older brother Mike has epilepsy and his mother, Lorraine, has been the heart of the organization, serving as president of the board and a tireless promoter of its cause.