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Community Corner

Hoffman Estates Couple Honors Son with Tag Days Donation Drive to Benefit Les Turner ALS Foundation

On May 4, volunteers wearing yellow aprons and holding collection canisters will be stationed at major intersections throughout Hoffman Estates as part of the Les Turner ALS Foundation’s Tag Days drives. Deb and Bob Von Schaumburg are spearheading this local effort in honor of their son Eric who was diagnosed with ALS, also known as Lou Gehrig’s disease, in June of 2013. A true grassroots campaign, Tag Days helps increase awareness of ALS and raises funds to support medical research, patient services and educational activities. The Hoffman Estates Tag Days drive is one of nearly 30 community drives in the Chicagoland area taking place in May. 

 

This is the first year the Von Schaumburgs have organized a Tag Days drive and they are recruiting friends and relatives to serve as the manpower for this effort. In addition, Schaumburg High School football coach Mark Stilling, and his wife Jami, have been a valuable resource since Eric’s diagnosis and have offered to rally support for Tag Days.

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Tag Days requires only a few supplies and many dedicated volunteers, which enables the Les Turner ALS Foundation to invest a high percentage of proceeds directly into services that benefit the ALS community. Since 1994, thousands of volunteers have participated in Tag Days and more than $1.5 million has been raised through this grassroots effort.

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The Tag Days drive is a way for the Von Schaumburg family to give back to the larger ALS community. In early 2013, Eric and his family began noticing his speech was slightly slurred. As the speech problems became more pronounced, Eric sought an opinion from a physician and eventually was referred to a neurologist. After examining an MRI and blood work, the doctor found no abnormalities, so additional tests were conducted, similar illnesses were ruled out and Eric was told he has ALS, a progressive neurodegenerative disease that affects nerve cells in the brainstem and spinal cord that control voluntary muscles. He is now under the care of Dr. Rob Sufit at the Les Turner/Lois Insolia ALS Center at Northwestern, which is their home base for Eric’s medical care. 

 

Eric is living with the bulbar form of the disease. In these cases, speech may become slurred, nasal in character, or quieter, and people may have difficulty swallowing and experience loss of tongue mobility. This life-altering news came just two weeks before Eric’s 30th birthday.

 

The disease continues to progress at a steady, slow pace. Eric’s speech is declining and eventually he may have to rely upon text-to-talk technology to communicate, but until then he lives life to the fullest. He is still mobile and working as Vice President of Financial Services at Mesirow Financial.

 

Despite his diagnosis, Eric remains positive, keeps everyone laughing and inspires those around him. Family and friends have generously volunteered to host fundraising events to benefit Eric’s “Fight Life a Champion Medical Trust,” which helps cover his medical expenses. In addition, Eric, his girlfriend Lindsay, and his siblings, Josh and Sara, are active members of the Les Turner ALS Foundation’s Young Professionals Group. As his voice weakens, Eric stays connected by sharing uplifting and honest stories via a blog, Fightlikeachampion.org.  

 

“The disease has brought us even closer as a family and has shown us how truly supportive our friends and neighbors are,” said Deb. “From the staff at the Les Turner ALS Foundation to Eric’s medical team at Northwestern, we have seen that the ALS community is filled with special people, and we wanted to give back to them.”

 

ALS Awareness Month  

May is National ALS Awareness Month, and to honor this milestone, the Les Turner ALS Foundation will oversee the Tag Days drives plus several new initiatives designed to educate the public about the disease. In partnership with ad agency Ogilvy, the Foundation has created a campaign that reinforces ALS is more common than you think. The campaign includes advertisements on CTA buses and in “L” stations; turning the Chicago skyline blue; radio PSAs and a social media contest. The public is encouraged to visit HelpCureALS.org for more information.

 

ALS

Amyotrophic lateral sclerosis (ALS), better 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. While treatments and interventions can help alleviate some symptoms and prolong survival, there is currently no prevention or cure for ALS. 

 

Les Turner ALS Foundation

Since 1977, the Les Turner ALS Foundation has been a leader in research, patient care and education about Amyotrophic Lateral Sclerosis (ALS), better known as Lou Gehrig's disease, and other motor neuron diseases (MND). The Foundation serves more than 90 percent of the ALS population in the Chicago area, providing a wide range of services, such as support group meetings and respite grants. The Foundation is affiliated with Northwestern Medicine where it supports two scientific research laboratories and a large multi-disciplinary clinical program.

 

For more information, to see a list of Tag Days community drives and to volunteer for Tag Days, call 847-679-3311 or visit www.lesturnerals.org.  

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