Frankfort Family Forms Team For ALS Walk To Honor Their Mom

FRANKFORT, IL — Last year, only two weeks before the annual ALS Walk for Life, Jenny Fortner and her siblings formed a team, Diane’s DeFeeters, to honor their mom, Diane Costello of Frankfort.

40 relatives and friends started fundraising last year, and raised $27,000 for the Les Turner ALS Foundation, a release states.

This year, members of Diane’s DeFeeters are determined to raise even more.

There is no specific test for ALS and making a diagnosis can be difficult. Most people diagnosed with ALS report experiencing progressive symptoms for a year or more, and this is what happened to Costello, a release states.

Costello began having trouble walking long distancing and had weakness in her legs. According to a release, she sought medical advice with multiple physicians speculating different causes. Costello, her husband Mike and their four adult children questioned these ideas and advocated for more information, the release states.

In November 2018, Costello was diagnosed with ALS at the Lois Insolia ALS Center at Northwestern Medicine.

The ALS Walk for Life is usually held at Soldier Field in Chicago, but has gone virtual this year. Participants of the walk will host their own socially distanced events, fundraise for the Les Turner ALS Foundation and walk in their communities during the weeks leading up to event day on Sept. 26, according to a release.

On Sept. 26, emcees Phil Schwarz of ABC7 Chicago and Melissa McGurren from “Eric in the Morning with Melissa and Whip” on 101.9 THE MIX, along with special guests, will then unite the ALS community in a Facebook Live event.

Costello is now dependent on a wheelchair for mobility, and also uses a BiPAP machine for breathing support at night, a release states. She has also started to record her voice and upload audio files to a speech-generating device in case her ability to speak is impaired.

However, Costello remains upbeat and enjoys prayer, calling her friends and relatives, spending quality time with her husband and caregiver, Mike, and teaching her nine grandchildren to read, cook, knit and play games via Zoom.

“The Les Turner ALS Foundation, the incredible doctors and nurses, and the larger ALS community have become our extended family and inspire us to give back through events such as the ALS Walk for Life,” said Jenny Fortner, Costello's daughter. “The Foundation’s team helps prepare us for what lies ahead with this unpredictable disease so that we can live in the moment and appreciate what we have.”

Fortner said the team is all planning to walk virtually and will then host a Zoom call with the team to celebrate on Sept. 27.

"Then, to keep the momentum going, we are going to host the free throw contest and jump-a-thon with the kids in November as a way to show gratitude and give back during the month of Thanksgiving," Fortner said.

"We wanted to keep raising awareness throughout the year, so we decided to space out the team activities slightly, and also align more when basketball season is upon us."

Since its inception in 2002, the ALS Walk for Life has raised more than $13 million for the Les Turner ALS Foundation.