When Karen Roberts’ cousin was diagnosed in 2005 with ALS — also known as Lou Gehrig’s disease — the family rallied around her.
Relatives took part in the annual ALS Walk4Life event for the first time that year.
“We started doing it to just show support for her,” said Roberts, a Plainfield resident.
Dubbed “Coco” by family and friends, Roberts said cousin Carolyn Sexton was the second family member to battle the disease — or so they thought.
“We started doing a family tree,” Roberts said. The research uncovered a shocking seven relatives with ALS, a neurodegenerative disease that affects nerve cells in the brain and spinal cord.
Though the family’s medical records are limited, Roberts believes her great-grandfather died of ALS and passed the gene on to his offspring.
“My mom was one of six children, and three of them have been affected by the disease; two have died of ALS and my aunt Cathy is bravely fighting today,” Roberts explained. “We’ll never know if it might have also affected my mom, who died at age 41 of an unidentified infection. In our family, ALS symptoms tend to appear when a person is in their late 40s or early 50s, so she may have developed it had she lived longer.”
Roberts said it’s uncommon for so many members of the same family to be affected by ALS.
“I believe of all ALS patients, only 5 or 10 percent have a genetic link,” she said. “Although I have found cases where there are other families with even bigger numbers. It’s not unheard of.”
On Saturday, roughly 20 friends and relatives will join together as “Coco’s Crew” to take part in the Walk4Life at Soldier Field in Chicago.
This time around, they’re walking in honor of Roberts’ aunt, Cathy Wrobel of Madison, Wisconsin, who is currently living with ALS.
Diagnosed in 2010, Wrobel is no longer able to walk. She is also losing strength in her hands and her breathing has become compromised.
“This is a difficult disease to cope with, but we do our best and appreciate each day,” said Wrobel. “It events like the ALS Walk4Life where I am surrounded by old friends and family that help me stay positive and strong.”
“Coco’s Crew” will also pay tribute to relatives who have died of the disease, including cousin Carolyn, Roberts said.
The event will benefit the Les Turner ALS Foundation, a nonprofit dedicated to helping fund research and offering patient care and education about the disease.
“Les Turner is really instrumental in helping people with ALS,” Roberts said. The organization helps supply patients with medical equipment and works to help families secure grants to fund medical care.
According to the Les Turner foundation, more than 5,000 people are expected to turn out for the 11th annual Walk4Life, which features a two-mile walk along Chicago’s lakefront and through Soldier Field.
Event emcees are Phil Schwarz of ABC-7 and Kathy Hart of The Mix 101.9 FM.
There is no registration fee to take part in the Walk4Life, although participants are asked to raise a minimum of $100 each.
Roberts said it’s not too late to donate to the Sept. 22 event.
Donations can be made online at www.alswalk4life.org or sent payable to the Les Turner ALS Foundation at 5550 W. Touhy Ave., Ste. 302, Skokie, IL 60077.