Marie Burenheide Hinderliter walks in the annual Walk to D’Feet ALS every year for a purpose — to raise awareness of ALS — a disease that has claimed three of her sisters’ lives and one uncle.
This will be the seventh year for the Walk to D’Feet ALS in Emporia. This year’s event begins at 8 a.m. Aug. 22 at Jones Park.
Hinderliter walks with her family, all Burenheides, in a team called “Burenheide Yer Gang.” The walk is important to the family because so many family members have died from the disease, also called Lou Gehrig’s disease.
For ALS, a neuromuscular disease, there is no cure. People are given between two to five years after the diagnosis to live. There are exceptions to the life expectancy rule but that is the average, said Anne Wenger, regional development director for the ALS Keith Worthington Chapter out of Wichita.
One person is diagnosed with the disease every 90 minutes and one person dies from the disease every 90 minutes. People of all ages are diagnosed, and Wenger said there is no connection to a specific lifestyle with ALS.
There is no test to determine whether an individual has ALS. Everything else is eliminated before a diagnosis is given for ALS, Wenger said.
Hinderliter said the family didn’t know what was wrong with her first sister who was diagnosed with the disease until she received the diagnoses of ALS.
“We knew something was wrong,” she said. “But we didn’t know what. There is no test for ALS.”
Two more sisters and an uncle in Hinderliter’s family received a diagnosis of ALS — a disease she was originally told wasn’t hereditary.
But, said Wenger, 5 to 10 percent of patients who have ALS have familial ALS, Wenger said.
Each family member in Hinderliter’s family had different symptoms before they were diagnosed with ALS. One sister started to fall. Another had trouble with her speech, something that usually is lost to ALS. The third sister was falling but could speak up to a month before her death. Hinderliter’s uncle had problems with his speech as well.
The Emporia ALS walk is held to support sufferers of ALS. All money that is donated through the Emporia walk stays under the Emporia umbrella, said Gary Ace, an organizer of the event in Emporia. It takes $200,000 per individual per year to support them with ALS.
Tickets for an opportunity to obtain a quilt may be had at the ALS Walk, Gary Ace’s Office, 1505 W. 12th Ave., Riverside Gardens, 607 Rural St., and Prairie Pieces Quilt Shop, 911 Commercial St.
Family members in four different states helped make the quilt and tickets are being sold in five states. All money goes toward the walk’s proceeds. There is one bed-sized quilt, two wall quilts and one table top quilt. Tickets cost $1 for one chance or $5 for six chances.
For information on ALS go to www.alsa-midwest.org. For more information on the local walk contact Gary Ace, 342-9555.