ALS community suddenly awash in awareness

David Wahlberg, Wisconsin State Journal

If you hadn’t heard of ALS before this summer, you’re not alone.

If you haven’t heard of it by now, you must be living under a rock.

Not only did the ubiquitous ALS Ice Bucket Challenge raise about $100 million from late July to late August, it boosted awareness of ALS, or amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease.

Up to 30,000 Americans have the progressive nerve cell disease, which causes loss of muscle movement and typically leads to paralysis and death within two to five years, according to the ALS Association.

“Here you have this disease that was vastly ignored and underfunded for 75 years, and now it’s on the front page of newspapers and on every TV station and radio station,” said Melanie Roach-Bekos, executive director of the Wisconsin chapter of the ALS Association.

“It’s going to dramatically change the landscape of this fight,” she said.

Jim Eutizzi, 51, diagnosed with ALS seven years ago, welcomes the sudden uptick in recognition of the condition.

“People come up and ask me now if I have ALS,” said Eutizzi, a UW-Madison graduate who lives in Waukesha. “For seven years, I’d never had anyone ask me.”

The ALS Association hasn’t specified how the influx of money will be used to expand research and patient care and support, or how it may be allocated to chapters.

But some ice bucket challenge donors have also designated $250,000, not included in the $100 million, specifically for Wisconsin. Half of that sum will go to research and half to support nearly 400 residents living with the disease, Roach-Bekos said.

Some of the Wisconsin money will support the state’s only ALS certified clinic, at Froedtert Hospital and the Medical College of Wisconsin in Milwaukee.

UW Health’s multidisciplinary neuromuscular clinic, which sees ALS patients, is affiliated with the Muscular Dystrophy Association.

Several UW-Madison researchers are studying ALS, including four whose work has been supported by the ALS Association in recent years: pharmacist Jeffrey Johnson, comparative bioscientist Masatoshi Suzuki, microbiologist Randal Tibbetts and neuroscientist Su-Chun Zhang.

Zhang reported in April that he identified an error in protein formation that could be a cause of ALS. His work uses induced pluripotent stem cells, skin cells reprogrammed to their embryonic state, a process co-discovered by UW-Madison scientist James Thomson.

Last year, Suzuki reported that transplanting human stem cells engineered to produce growth factors into rats with an ALS-like condition can improve their muscle function and survival.

With just one drug approved for ALS today, more discoveries are needed, Roach-Bekos said. The drug modestly extends survival, according to the ALS Association.

Eutizzi said he is on the drug but can’t tell how much it may have helped. He is happy to have lived longer than most patients following diagnosis, but doctors “just don’t know why it goes quick or slow,” he said. “You live in this cloud.”

He has lost the use of his upper body and relies on a breathing machine most of the day. A father of four children, ages 8 to 20, he talks about ALS at public events.

He hopes this summer’s bump in awareness of the disease translates into improvements for patients.

“Hopefully the publicity will have dividends down the road leading to a cure,” he said.