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New group created to support ALS research; fundraising walk planned in Massena

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MASSENA — Before she died last year, Sandra E. Tulga asked family members to make her a promise.

The 57-year-old urged her loved ones to help find a cure for amyotrophic lateral sclerosis, commonly known as ALS or Lou Gehrig’s disease.

Mrs. Tulga, Norfolk, suffered from the neuromuscular disease for about five years before she died March 8, 2013.

The disease gradually damages nerve cells that control muscles, which causes people to lose their ability to walk, eat and, eventually, breathe.

Her sister, Debra M. Peters, said family members have kept their promise to Mrs. Tulga by creating a new nonprofit that will raise money to support ALS research projects and assist families affected by the disease.

“She told me she wanted us to find a cure for her children and grandchildren,” Mrs. Peters said. “She was persistent.”

Mrs. Tulga’s father, Keith L. Edgerly, died of the disease in 1991.

Family members also want to educate St. Lawrence County residents about the disease because they believe it doesn’t get as much exposure as other illnesses.

Mrs. Tulga’s daughter, Christina D. Miller, 35, Massena, is serving as president of the new organization, named Sandy’s Steps to Edge Out ALS Inc. The board of directors meets regularly and a website has been created at www.edgeoutals.com.

Mrs. Miller said she wants to raise public awareness by holding fundraising events and other activities.

“There’s not enough knowledge about it,” Mrs. Miller said. “It’s a rare disease, but there are people in St. Lawrence County who are suffering from it. It’s a very debilitating disease.”

To kick off fundraising, a 5K run/walk has been scheduled for May 10 at Robert Moses State Park. Half of the proceeds will go to a family suffering from ALS while the remainder will be donated to ALS research.

Registration starts at 11 a.m., with the walk starting at noon. The fee is $10 per person or $75 for a group of 10. Those who register in advance online are guaranteed a T-shirt. The day’s events also include a chicken barbecue, a children’s craft station, a bake sale, a 50-50 raffle and a bottle drive. Dogs on leashes are welcome and pet bandanas will be for sale.

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