Woman of Substance: Texas Woman Who Launched ALS Association Chapter in Her Home State Continues to Inspire Others After Being Diagnosed with Lou Gehrig’s Disease

February 4, 2013

On October 27, 2000, Linda Allen lost the love of her life. Her husband of more than three decades, Marshall Allen, succumbed to ALS after gallantly battling it for close to four years. Marshall’s strength and resolve imbued Allen with a purpose to assist others coping with Lou Gehrig’s disease.

More than a decade after her husband’s death, doctors diagnosed Allen with ALS in September 2011. “No one believed it was ALS,” said Allen. Two years earlier, she experienced issues with balancing her body and cracked her back and her left shoulder, and prior to her diagnosis, she fractured her foot.  “I was using a bone stimulator on my broken foot when I knew I had ALS,” she said. Allen adds that she also experienced fasciculations—the quick, unprompted muscle twitches— that caused her skin to move, which some people with ALS have.

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Surrounded by love: Allen with her granddaughters at the Dallas-Fort Worth Walk to Defeat ALS®, (L to R, back) Briana and Megan and (front) Savannah and Emily

Despite these challenges, Allen, 66, has remained determined to help those facing the myriad physical and emotional challenges of the disease, even though ALS has impacted her ability to speak, move and breathe. She has limited movement in her legs and hands and admits doing “just the simplest thing will leave me out of breath.”

Both Allen and Marshall played vital roles in launching the North Texas Chapter in the late 1990s after they returned to their home state of Texas from Kansas to be near family, including their daughters Leah Allen and Gina Six and son Christopher Allen. The Allens worked closely with The Association’s Keith Worthington Chapter when they lived in Wichita yet noticed no ALS support groups existed in the Dallas area when they re-located to the nearby suburb of Arlington. Allen saw a need to launch a chapter in the area.

“A caregiver had contacted The ALS Association to establish a chapter here,” said Allen. She and Marshall had been in the Lone Star State for about five months, when they received an invitation to a meeting to determine if The Association should have a presence in the community. “I contacted the National Office wanting to know their plans and the criteria to start a chapter in North Texas,” she said. Allen met with members of The Association’s executive team, and they asked her to lead the process to institute what would become the North Texas Chapter.

While at the chapter, Allen and Marshall served as Trustees and worked closely with other people with ALS and their caregivers. Allen cherishes her time with the organization and believes it allowed her to cope with her loss. “Being around others with ALS and their caregivers helped me through the grieving process and gave me a greater understanding of what it is to have faith, hope, and love,” said Allen. “It has been a privilege to have met and been friends with so many ALS families. They truly are some of the nicest people you will ever meet.”

Allen also worked as the chapter’s Executive Director from 1999 - 2001 and Board President from 1996 to 1999 and served as program manager for “Extra Hands for ALS,” an organization where she interacted with high school and college students and taught them about Lou Gehrig’s disease. Allen recruited these students to work with people with ALS for two hours a week to help the latter with household duties.

“We had 157 students volunteering throughout the Dallas Fort Worth area,” Allen said of “Extra Hands for ALS.” These students taught their peers about the disease through various awareness projects they completed each semester. In addition, Allen turned them into volunteers for the Walk to Defeat ALS® events the chapter held.

Through a consolidation in 2012, the North Texas Chapter became part of the Texas Chapter. Allen retired from work in May 2010 due to the disease’s impact on her body, but she continues in her endeavors to support others with ALS and inspires awe in those who have worked with her.

“Linda Allen is the epitome of grace and inspiration. Through her quiet strength, vision and determination, she has helped thousands of families in North Texas affected by ALS –including her own,” said David Chayer, Executive Director of the Texas Chapter. “It is an honor to know Linda.”

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Linda Allen (R) with the Texas Chapter's Manager of Special Events, Elizabeth Macasadia

Allen volunteers with the chapter and brings awareness through participating with her family in its Walks, even though she relies on a variety of tools to assist her with daily living. She adds that her niece Holly Potter- Harvey has joined in the fight against ALS and partnered with the chapter last fall for a fundraiser, Bettin’ on a Cure for ALS.

Some of the items Allen uses include a manual and electric wheelchair, a bi-pap machine for breathing, a feeding tube, suction machine, a hoyer lift to transfer her to her bed, and an iPad to communicate with family and friends. Daughter Leah serves as her mother’s primary caregiver, and both Leah and her daughters, Briana 12, and Savannah, 5, live with Allen.  Her other caregivers include Six and her sister Vicki Heyer.

On February 8, The Association and the Texas Chapter will honor Allen and fellow Texan living with ALS, Michael Jaillet, at the 3rd Annual Luncheon for Heroes Living with ALS. The event, held at the Fairmont Hotel in Dallas, is the highlight of The Association’s Annual Leadership Summit, and pays tribute to people living with ALS who have made “an indelible impact on The ALS Association and the community-at-large.”

Allen’s positive influence on the chapter remains, especially since she interacts with others living with ALS on a personal level. “The people going through the disease process learn from each other and have a good idea of what you are going through, even when family and friends may not.” 

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