Organizations partner to create more awareness for ALS

BRIDGEVILLE, Del.- Sunday, The Rehoboth Walk to Defeat ALS and the ALS Association Greater Philadelphia Chapter put on Country Up Fest in Bridgeville to raise awareness of a disease they say is not well-known.

“ALS is also referred to as Lou Gehrig’s disease and it’s a neurological disorder that effects the muscular system where it basically paralyzes the person, takes away their breathing, their mobility,” Bill Obrien, Rehoboth Walk to Defeat ALS Walk Chair and event organizer, said.

“When you see this community come out and know that they are supporting such a great cause it’s a great thing,” Karen Hearn, owner of Willowbrook Weddings, said.

Event organizers said the average life span for ALS is 2 to 5 years after diagnosis and there’s currently no cure.

“In this nation right now, about every 90 seconds a person is diagnosed with ALS and a person dies of ALS,” Obrien said.

“We are seeing the numbers kind of go up as we get more access to people going to treatment centers and multidisciplinary clinics,” Lexi Brace, Assistant Director of Marketing and Engagement for the ALS Association Greater Philadelphia Chapter, said.

While we’re told ALS isn’t on everyone’s radar, funding to help those with ALS becomes a problem and raises a question. “How are we ever going to end this disease without the proper funding and research?” Obrien said.

But with events like this one at the Willowbrook Weddings venue, these groups are trying to change that by gaining more support and dollars.

“The more people that you can get here it’s just so important,” Hearn said.

“We just help to provide resources, access to those clinics, we provide in home care to them as well, which is huge so that those care takers can have a little bit of respite a little bit of a break,” Brace said.

Singer Jimmy Charles will putting on a concert tonight at the event along with other artists. We’re told he will be celebrating his new release called “Country Up.”

The Rehoboth Walk to Defeat ALS will host their annual walk at the Rehoboth Beach Stand on September 10, starting at 8:30 a.m.
Categories: Delaware, Local News