Lisle daughter goes on the attack against ALS
ALS is a disease that shrinks the world of its patients.
As nerve cells die because of the degenerative disorder, the brain can no longer transmit signals to the muscles. As muscles stop receiving signals, they lose the ability to move.
Physical strengths falter and fade, leaving patients without easy ways to stay active in the world around them. Yet mental functioning remains largely intact, making them painfully aware of their ever-dwindling existence.
“It's really hard because you know what's coming,” said Liz Roman of Bolingbrook, whose aunt died of the condition in early 2015, roughly six months before her mother was diagnosed with it.
Roman has seen her mother give up her love of travel and remain inside her Springfield home. She's seen the condition make her once-vibrant mom, Mary Shaffer, at age 66, “pretty immobile” — save for use of a “spiffy, cool wheelchair” she has on loan from the ALS Association.
But Roman, who owns a women's strength and conditioning gym in Lisle with her husband Art, says she's had enough of ALS and its shrinkage.
She's planning an event she hopes will do the opposite: Grow.
Attacking ALS, a blind-draw volleyball tournament to benefit the ALS Association's Greater Chicago chapter, is the event Roman created this summer to grow local support for the organization that's already helped her family so much.
Set for 9 a.m. to 5 p.m. Saturday, Aug. 26, at the sand volleyball courts in Lisle's Four Lakes complex, the tournament aims to bolster awareness of ALS, which is short for amyotrophic lateral sclerosis, and raise money for the support and advocacy the ALS Association provides.
“If we help somebody some day live a little bit longer, walk a little bit longer, that's my hope,” Roman said.
In the two years since her mother was diagnosed, Roman, 28, she said she's leaned heavily on the services of the ALS Association for resources and understanding.
“When I found out, I was a wreck,” Roman said about receiving her mother's diagnosis. “I'm the youngest of six. For me, my mom isn't going to be there for when I have kids. That was really hard to wrap my head around.”
The ALS Association offers support groups for ALS patients and their families with suburban meetings in Aurora, Glen Ellyn, North Riverside and Orland Park, which relatives find comforting, says Jessica Dickman, who helps plan the annual Walk to Defeat ALS.
The organization also stocks lending libraries with various levels of supportive mobility equipment such as manual and power wheelchairs to help patients who buy one device just to see their condition worsen until they need another.
“ALS is a very costly disease to live with, and it puts a huge burden on the families,” Dickman said. “It's hard for them to relate to other people.”
Roman initially didn't know of the support groups, but she felt the need for connections with others in a similar situation.
“I want people to know it's OK to have the feelings you're having,” she said.
The social format of the blind-draw volleyball tournament, which randomly assigns each registrant onto a four-person team, could help connections form, said Janet St. Clair of St. Clair Volleyball, whose company is running the Attacking ALS games.
“It really gets you to step out of your box,” St. Clair said. “People are able to play a sport they love, meet new people and just spend a whole day out in the sun enjoying themselves.”
Player registration costs $35 in advance at opposingforcegym.wodify.com, or $40 on game day at 6005 Forest View Road in Lisle. Tickets include beer, lunch and access to two silent auctions and raffles.
The tournament format can accommodate up to 180 players and, if the field is full, games are expected to last until 4 or 5 p.m. The event will conclude with an after party from 5 to 7 p.m. at BaseCamp Pub, 5750 Lakeside Drive, Lisle, which is right next to the volleyball courts at the foot of a ski hill. The after party will feature live music and bar specials.
When Roman started planning the event, she met with two Naperville Central High School seniors who recently hosted their sixth and final dodgeball tournament to raise money for the fight against ALS. Roman, a decade their senior, said she was encouraged by hearing how the teens' event morphed from something they planned for a seventh-grade service project to a tradition with meaning and momentum that raised more than $100,000.
“It was awesome to hear from them how it grew,” Roman said, setting the same goal for her new tournament. “It's my vision that this will grow.”
If you go
What: Attacking ALS Blind-draw Volleyball Tournament to benefit the ALS Association's Greater Chicago Chapter
When: 9 a.m. to 5 p.m. and after party 5 to 7 p.m. Saturday, Aug. 26
Where: Sand volleyball courts at Four Lakes, 6005 Forest View Road, Lisle
Cost: $35 in advance online at <a href="http://opposingforcegym.wodify.com/OnlineSalesPortal/Home.aspx">opposingforcegym.wodify.com</a>; $40 at the event
Info: Search “Attacking ALS” on Facebook