ALS Research Program Administrator Provides Guidance

For Peggy Allred, Protecting Patients is Primary Focus

Peggy Allred, PT, DPT, speaks with patient James Kawaguchi during an ALS clinic day.

A cure for Lou Gehrig's disease (ALS) may someday put Peggy Allred, PT, DPT, out of a job – but she'd be fine with that.

"I would love that," she said. "I hope patients know that I'd be the first one handing the cure out if it came our direction."

For now, Allred is the Research Program Administrator for the Cedars-Sinai Neuromuscular Disorders Program  in the Department of Neurology. Allred's role is to introduce, streamline and make available clinical trials to neuromuscular patients, primarily those with ALS, and to facilitate program development. She also acts as a patient advocate for anyone who decides to take part in a clinical trial.

Amyotrophic lateral sclerosis (ALS) attacks muscle-controlling nerve cells – motor neurons – in the brain, brainstem and spinal cord. As motor neurons die, patients lose the ability to initiate and control muscle movement. The disease leads to paralysis, with death usually occurring within five years of diagnosis.

Allred tells patients it's her job to research information, find credible resources, and find available clinical trials, both in the U.S. and abroad. She wants patients to know they have a safe and trustworthy place they can go to for help or to ask questions, regardless of how extreme they sound.

 
Peggy Allred, PT, DPT, right, talks with Kendra-Romito, clinic and program coordinator, during ALS clinic day.

"I strive to be their 'go to' resource for clinical trial information," said Allred, who joined the Cedars-Sinai team July 2013. "Call me up, send me the newsletters you get, send me those emails from friends and family. Let me help you discern what might be good or not good for you, because it is different for everybody."

Allred said her curiosity and skill at knowing the right questions to ask to get the best answers for patients was fostered while working at an ALS clinic at the Baylor College of Medicine.

"My philosophy is: If it doesn't damage you physically, psychologically or financially, then we will encourage you and support you in trying it," Allred said. "If it damages you in any one of those three ways, then we need to serve as your safety net and your protector."

Allred was introduced to Robert H. Baloh, MD, PhD, while she was part of the ALS research team at University of Washington. Now the director of Neuromuscular Medicine and the ALS Program at Cedars-Sinai, Baloh describes Allred as a "game changer."

"She is the kind of person who brings our work to another level," Baloh said. "She has a tremendous amount of experience in ALS, in clinical care and research, and she's been a clinic coordinator for one of the busiest clinics in the country. She knows at the ground level how clinics run, how ALS patients need care and how they interact with research."

ALS Program Coordinator Tami Kendra-Romito said Allred is a not just a fantastic resource for patients, but also for her fellow team members.

"I can ask Peggy all my questions, even the most elementary ones, and she takes the time to thoroughly answer them and teach me," Kendra-Romito said. "This makes me more comfortable in my job because I know I have a resource I too can go to for complex or simple questions."

Allred received her bachelor's degree in physical therapy from Texas Women's University, and went into practice at Baylor College of Medicine and Methodist Neurological Institute in Texas. Allred completed her doctorate work in physical therapy through Simmons College in Boston.

"I am so honored to be working with these patients at this vulnerable time in their lives, knowing how challenging each and every day can be," Allred said. "The most rewarding thing I can do is help them have better quality of life and to be responsive to their needs and questions."

Allred speaks at a recent conference for ALS patients at Cedars-Sinai.