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UIHC ALS clinic gains awareness

BY KAITLIN DEWULF | AUGUST 28, 2014 5:00 AM

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From University of Iowa President Sally Mason to the entire Daily Iowan staff to X-Men star Patrick Stewart — the ALS “Ice Bucket Challenge” has swept the nation and clogged social-media feeds, all in just under one month.

Since the Ice Bucket Challenge went viral on July 29, the ALS Association has received $94.3 million in donations, an enormous jump compared with $2.7 million during the same time period last year, according to the association national website.

UI Clinical Professor Laurie Gutmann, the vice chairwoman of clinical research in the Neurology Department, said she expects the UI ALS Clinic to see an increase in funds as well.

Gutmann said the widespread publicity the Ice Bucket Challenge has given to the disease has helped draw awareness to the local facility — which has 60 patients at any given time.

“We’ve had numerous people call our facility and ask to donate after the challenge,” Gutmann said. “There is a lot of good coming from this publicity.”

Amyotrophic lateral sclerosis — more often referred to as ALS or Lou Gehrig’s disease — is a motor neuron disease that affects the nerve cells in the brain or spinal chord that go to muscles, disrupting use of voluntary muscles.

“In general people don’t lose cognitive function and are completely aware of what’s going on around them, but will eventually lose the ability to communicate,” Gutmann said. “That is why it’s such a devastating disease.”

Approximately 22,600 people — or 6 to 8 per 100,000 — are living with ALS in the United States at any given time, according to a report by the ALS Association.

There is only one medication available for treatment, which is not very effective.

Gutmann said the lack of medication is even more discouraging because of the low success rate of clinical research trials.

“The reason these trials are failing is because we don’t have the answer yet, not because of the lack of good ideas,” she said. “This is really a time to push and try to find a cure for this disease.”

She said the ALS Association doesn’t waste funds; it instead looks at research projects and moves forward if something shows promise. Gutmann said based on the reputation of the association, donation money from the social-media hype will be money well spent.

Other institutions in Iowa City are also experiencing additional exposure thanks to the Ice Bucket Challenge.

Jay Kamath, the president of the John Paul II Medical Research Institute, said the challenge has provided a growth in awareness for the institute, especially because it is a smaller research facility.

He said the institute has received significantly more donations from individuals who are looking for an alternative method of research to pledge their money to, one that doesn’t practice the use of embryonic stem cells.

The John Paul II Medical Research Institute prides itself on using solely various adult stem cells and induced pluripotent stem cells.

“Many times people don’t realize their money is going toward an organization that uses stem-cell research,” Kamath said. “With raised awareness, more of those individuals will realize we are an option to donate to.”

Gutmann said the Ice Bucket Challenge is inspiring UI students to better educate themselves on what ALS is and whom it may affect. The social-media aspect, she said, gives the association a way to get its message out to young people.

UI senior Tessa Vazquez did just that when she accepted the challenged and nominated her friends to do the same.

“I went online, and read about ALS, and explored the website after I was nominated,” she said. “It was slightly shocking and upsetting to hear about, but then shortly after, I participated in the challenge.”

UI freshman Rachel Weyers also completed the challenge after her news feed was flooded with Bucket-Challenge videos.

“All the videos made me especially want to get involved and get nominated,” she said.


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