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Shining a spotlight on the National ALS Registry

Posted by Justin Kunz on Sep 6, 2017 09:54 AM

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National ALS Registry video is now live.

As part of the battle against ALS, Brunet-García Advertising created a video that showcases a promising tool being used by researchers and patients alike.

Amyotrophic lateral sclerosis (ALS) is a progressive neurological disease that targets the nerve cells responsible for voluntary movement. The disease progresses and gets worse over time, leading to the gradual deterioration of muscles. Currently, there is no cure for ALS, but the fight for solutions continues every day.

Many of us have heard of or taken part in the “Ice Bucket Challenge,” which was successful in raising money and awareness for the disease. Fewer people, however, are aware of the National ALS Registry program created to help people living with ALS. Brunet-García worked with the Agency for Toxic Substances and Disease Registry (ATSDR) to create a video that highlights the importance of the Registry.

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Still images from the National ALS Registry video.

The video opens with the line “ALS research counts on you.” It is a welcoming tone, and an important one—success for the Registry relies on many groups: people living with ALS, their caregivers, researchers, clinicians, and more. The National ALS Registry was mandated by Congress and provides a wide variety of resources for individuals living with ALS and researchers. Through the Registry, enrollees can learn about numerous research studies and clinical trials. This feature gives individuals living with ALS an opportunity to support research, and it helps researchers collect data and identify risk factors. The Registry also works to better understand the disease by funding external research. Finally, the Registry recently added the National ALS Biorepository. This Biorepository gives people with ALS a means to donate biological specimens at no cost and provides researchers samples to study.

“We can get a better picture of the disease because of the Registry, by looking at factors like age and sex,” said Account Coordinator Francie Lefkowitz. “Patients shouldn’t feel like numbers. With the Registry, they play an important role.”

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Icons developed for the National ALS Registry video and communications materials.

The video’s creation took careful and diligent work, and it was a team effort. Brunet-Garcia collaborated with another contractor to create the script and storyboards before illustrating and producing the animation, and worked with ATSDR to ensure quality and scientific accuracy. 

“Often keeping it simple is the biggest challenge,” said Associate Creative Director, Aerien Mull. “It’s rewarding to see such a complex and challenging topic covered in a way that can engage the audience and check all the accessibility boxes, while remaining factual and creative. I hope that through continuing to produce health communication media, we can increase awareness and engagement with the Registry.”

Lefkowitz said she hopes the video will be used in various settings, including doctors’ offices and clinics, setting an example of beneficial interaction between healthcare providers and patients.

A Spanish version of the video will be created soon as part of a continuing effort to reach the Hispanic community. To create the Spanish video, the agency worked with ATSDR and the Centers for Disease Control and Prevention (CDC) translators to learn how to accurately pronounce ALS in Spanish, which is “ELA.” In addition to the video, ATSDR is creating a Spanish website.

“People living with ALS want to give back,” Lefkowitz said. “They want to help the future generations, and the Registry helps them do that.”

With individuals living with ALS, researchers, clinicians, and the Registry all working together, we are taking steps toward progress.