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April Volunteer of the Month: Lura Sawyer

Lura and Peter Sawyer understand the value of living every day to the fullest. They have made it a mission to ensure that every family affected by ALS can make the most of every moment, too.

The Sawyers’ story with The ALS Association Greater Philadelphia Chapter started when Peter was diagnosed with ALS in April of 2015 at Johns Hopkins University Hospital. Pete had been experiencing symptoms such as choking and facial issues since 2014 and doctors were unsure if it was due to stroke or another cause. What Lura and Peter were sure of, though, was that they were going to tackle this challenge together.

As Pete’s symptoms continued to accumulate, Lura made it a point to share his story and ensure that people know about Peter the person. Pete grew up in Murphysboro, Illinois, and went on to serve in the United States Air Force from 1968 to 1972. When he returned to his hometown, he went to college and got a job at IBM in Maryland, which is where he met Lura. After just a year and a half together, Lura and Pete were married.

While Pete did not have children of his own, Lura already had a son and daughter. Today, the Sawyers have five grandchildren who they love dearly.

Since Pete considered himself something of a beer snob, he and Lura spent many weekends traveling to different breweries. He loved trying hard to find breweries, but his favorite part was enjoying the trips together. When they weren’t traveling, Pete liked trying flight simulators with a friend or building and launching model rockets. Meanwhile, Lura loved baking, so, between the two of them, they always had good food, good drinks, and good company.

Even after Peter’s ALS diagnosis, the Sawyers continued to travel all across the country. The travel had greater meaning now as they took time to savor both scenic locations and the precious time together and with friends.

Lura and Peter’s circle of friends continued to grow after his diagnosis. They began making connections at the ALS Treatment Center of Excellence at Penn State Health Milton S. Hershey Medical Center. They quickly became friends with the Chapter staff and also became very involved with Chapter Resource Groups, where Lura met other caregivers and learned their stories, challenges, and strategies for looking after a loved one with ALS.

After meeting other ALS families, Lura decided that she was going to do all that she could to support the ALS cause, not just for Pete, but for everyone impacted by the disease. They began by joining the Hershey Walk to Defeat ALS. Seeing the hope and enthusiasm from so many teams inspired Lura to do more, including organizing and recruiting others to join the Walk every year.

Lura wanted to expand the circle of support even more, so she took every opportunity to raise awareness for the Walk to Defeat ALS and ALS generally. The Sawyers have shared their stories through different media outlets in South Central, PA, particularly bringing attention to the connection between ALS and military service in the hopes that other veterans would get the care they need and deserve.

As the Sawyers saw the power that their story had to inspire others, they decided to find more ways to get involved, especially through advocacy. Over the past few years, Lura and Peter have participated in countless advocacy meetings, in Harrisburg, PA, and in Washington, DC, and in virtual visits. Peter’s symptoms have progressed to the point where he is in a specialized wheelchair, and Lura has demonstrated the challenges he faces navigating narrow hallways and elevators when visiting lawmakers. Their testimony has garnered significant support that has lead to increases in state funding for ALS care in Pennsylvania and continued boosts to funding for ALS research from Congress.

In recent years, Lura’s advocacy has stood out as she talked about how her experience as a caregiver has inspired her to go back to school and get her degree in social work. Her love of Peter and her compassion for other caregivers encouraged her to put in the effort. In early 2023, Lura graduated from Walden University with her Social Work degree.

In addition to her work with the Walk to Defeat ALS and advocacy, Lura has organized the ALS cause throughout South Central, PA, in every way that she can. Lura has helped lead the Let Hope Grow community garden and Facebook group, bringing attention and support to local ALS families. She has taken the initiative to represent the Chapter and the ALS cause at information tables at local events.

Starting in 2022, Lura also became involved with the Jimmy Charles Band, working with musician Jimmy Charles to put on successful events to raise money and awareness for the ALS mission.

Lura does so much as a Chapter volunteer that it can be difficult to list it all. In early 2022, Lura and Peter received the Hero Award from The ALS Association for their inspirational work. When the Chapter recognized Lura and Peter for their tireless advocacy with the Flame of Hope in 2020, United States Senator Bob Casey recorded a special message of recognition. But through all of that, Lura’s focus is not on personal accolades, but on improving the lives of others. The Sawyers are always quick to sign up for the next event, organize in their community, recruit new volunteers, and spread awareness and hope for all people affected by ALS.

Thank you, Lura and Peter, for all that you do. Because of your efforts, more people will have access to the care they need and we can be closer to one day defeating ALS.

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