Orland Park Family to Honor Mother at 12th Annual Les Turner ALS Walk4Life

In late 2009, when Mary Matusiak of Orland Park began experiencing weakness in her hands, she was concerned the cause could be ALS (Lou Gehrig’s disease). Mary’s aunt passed away from the disease when Mary was only a teenager, but she recalled the experience clearly. After many doctor visits and numerous tests, Mary was diagnosed with ALS in February of 2011 and slowly lost strength in her arms, legs and breathing capacity. Having lost her courageous battle against ALS on June 3, 2013 at the age of 52, Mary’s family will honor her memory at the 12th Annual Les Turner ALS Walk4Life on September 22 in Chicago.

The Matusiak family, along with friends and neighbors, will join nearly 6,000 people at Soldier Field for the ALS Walk4Life. As one of the largest gatherings of the ALS community, the ALS Walk4Life is a celebration of hope, courage and caring. The event will be hosted by meteorologist Phil Schwarz of ABC7 and Kathy Hart of The Mix 101.9FM and will feature a 2 mile walk along Chicago’s lakefront and through Soldier Field, as well as music, entertainment, food and children’s activities.

Most people walk and fundraise in teams honoring the lives and legacies of their loved ones who have been affected by ALS. Mary’s daughter Sam, 26, is serving as captain of their team, “ALS Sucks,” and has been actively recruiting friends and family. To date, the team of approximately 30 people has raised more than $4,600 for the Les Turner ALS Foundation.

“This is our first time participating in the Les Turner ALS Walk4Life, and we are looking forward to joining together with people who understand what we’ve experienced during the past several years,” said Sam. “My mom was my hero, she was an inspiration to all of us. She pushed herself to fully live life despite her declining abilities and she wanted to stay engaged in our lives until the end.”

Shortly after Mary was diagnosed, Sam moved back home to help her dad care for her mom. As a product manager for a meat casing company, Sam travels extensively for work and often included her mom on her business trips throughout the United States. Sam took Mary to Negril, Jamaica for their final international trip together to bring in the New Year of 2013.

As a patient at the Les Turner/Lois Insolia ALS Center at Northwestern, Mary learned about the world-renowned research of Teepu Siddique, MD. The team at the Center collaborates with investigators in the Les Turner ALS Research Laboratory led by Dr. Siddique, and together they helped Mary better understand her medical lineage, which includes seven relatives who have been affected by ALS.

A teacher at Hometown School in Oak Lawn, Mary valued education and was interested in helping contribute to the advancement of science. Because Mary’s family has a direct genetic link to ALS, she was eager to contribute to Dr. Siddique’s work, which focuses familiar ALS and on understanding the processes by which ALS develops so that effective treatments can be created. Mary donated her brain, spinal cord and eyes to Dr. Siddique’s research with the hope that medical professionals will uncover the mysteries of this horrific disease.

“We are grateful to families such as the Matusiaks for their support of the Walk4Life and in Mary’s case, for her selfless dedication to advancing science through the donation of her organs,” said Wendy Abrams, executive director of the Les Turner ALS Foundation.

ALS Walk4Life

In its 11-year history, the ALS Walk4Life has collectively raised nearly $8 million. Individuals are provided with fundraising tools to help them plan letter writing campaigns, host special events and secure support from local businesses.

Approximately 250 teams are expected to participate in the ALS Walk4Life; some teams are as large as 200 people, others as close knit as a few. The event draws people from throughout the country, all of whom have teamed up for the fight against ALS.  

While there is no registration fee, the Les Turner ALS Foundation encourages participants to raise a minimum of $100, and those who reach or surpass this goal will receive an ALS Walk4Life T-shirt. Registration will open at 9:30 a.m. and ALS Walk4Life Opening Ceremony will begin at 10:40 a.m. The walk will start at 11:00 a.m. Participants are encouraged to pre-register at www.alswalk4life.org.

This year’s ALS Walk4Life sponsors include: ABC7 Chicago, The MIX 101.9FM, Abt, American Chartered Bank, B&B Catering, Blick Art Materials, Comcast, Corner Bakery, The Private Bank, Stabil and US Foods.

ALS

Amyotrophic lateral sclerosis (ALS), commonly known as Lou Gehrig’s disease, is a terminal neuromuscular disease that attacks a person’s muscles, gradually robbing them of their ability to walk, speak, eat and breathe, yet usually keeping their mind intact. At any given time, approximately 35,000 people in the United States are living with ALS. Currently there is no cure. 

Les Turner ALS Foundation

Founded in 1977, the Les Turner ALS Foundation is one of the nation’s preeminent organizations dedicated to the treatment and elimination of amyotrophic lateral sclerosis (ALS).  The Foundation is affiliated with Northwestern Medicine where it funds two research laboratories and a multi-disciplinary clinical program. The Foundation’s patient services include, support group meetings, professional in-home consultation services, communications and durable medical equipment programs, respite care grants, and educational activities. The Foundation serves approximately 90 percent of the ALS population in the Chicago area.

For more information, call 847-679-3311 or visit www.lesturnerals.org.