Jon Newsome used to live an active life filled with exercise and travel.

Now, he is confined to a wheelchair with ALS, a disease without a cure.

An ice sculpture of Newsome appeared in front of Norris University Center on Thursday in an effort to raise awareness about the disease.

Building off the success of the Ice Bucket Challenge, which has raised more than $100 million, the Les Turner ALS Research and Patient Center at Northwestern Medicine commissioned ice sculptures depicting ALS patients for NU’s Evanston and Chicago campuses.

In total, 12 sculptures were commissioned, the other 11 of which will be stationed on NU’s Chicago medical campus Friday and around downtown Chicago on Tuesday. The life-size sculptures were created by artist Jim Nadeau, who studied photos and videos of the patients. A plaque accompanies each sculpture, providing details about the person’s life.

The ice was chosen as a metaphor for how ALS impacts the human body, said Jordyn Landberg, the Les Turner ALS Foundation’s marketing and communications manager.

“The way that we’re showing how ALS affects the human body is really incredible by the use of ice and how the ice slowly melts to indicate how muscles melt away in a person who is living with ALS,” she said.

The exhibition also builds on this year’s ALS Awareness Month slogan, “Freeze ALS.” The 12 sculptures depict ALS patients, both those who are still battling the disease and those who have died.

Andrea Pauls Backman, the foundation’s executive director, said there is an explicit focus on the individuals and their families who are impacted by ALS.

“We’re telling the stories of their lives and who they are or who they were and what their hopes and dreams are despite the devastating effects of the illness, which is being demonstrated by the melting of the ice sculptures,” she said. “Although there were something like 2.5 million people that poured a bucket of ice water over their heads last summer to raise awareness for ALS, it really is about the people who have ALS. We wanted to bring those people to life.”

The center at NU Medicine has been a leader in ALS research, helping discover the genetic causes of the disease and its common pathology and mechanisms, said Feinberg neurology Prof. Teepu Siddique. He said the ice sculptures help memorialize the patients who have succumbed to the disease.

“It’s an indictment of society, of researchers and of institutions that these people should have been cured of the disease,” he said.

However, Siddique said he’s hopeful the center’s research will help find a cure.

“We now have ample targets that can be used for theory if we had the appropriate resources to do so,” he said.

Email: [email protected]
Twitter: @tylerpager