ALS sufferers to tell stories on Web site

Nearly seven years ago Eric Barb learned that he had amyotrophic lateral sclerosis, or Lou Gehrig’s Disease.

The symptoms were subtle at first; his hands were not as strong, and he struggled with simple tasks. Over several years his arms became weaker, and he could not hold his daughters, now 9 and 11. Now Barb, 36, cannot walk and uses a wheelchair.

But his struggle with the disease, which slowly destroys the body’s motor neurons, is not a sad one, according to him and his wife, Lisa.

His story about how the disease has changed his life will be featured today on the Muscular Dystrophy Association’s Web site. The group’s nationwide campaign to raise awareness about ALS will tell the stories of 31 people living with the disease. That’s one a day during May.

To see Barb’s story go to als-mda.org. Lynn Murray, an Overland Park resident with ALS, will be featured on the Web site next Thursday.

National ALS campaign features Triad woman
By Kory Dodd
Staff Writer



HIGH POINT - When Lisa Shelley of High Point learned she had amyotrophic lateral sclerosis, or Lou Gehrig's disease, in February 2006, her life changed, but it didn't shatter.

The overwhelming amount of love and support she received from her family and friends helped her cope and inspired her to start a program to help fellow ALS patients.

Impressed by Shelley's story, the Muscular Dystrophy Association has chosen her to be one of 31 people featured on its Web site this month as part of a national campaign for ALS Awareness Month called "ALS: Anyone's Life Story."

When she saw her own fears reflected in the eyes of her fellow patients at the Muscular Dystrophy Association-ALS Center in Charlotte, Shelley wondered if they were getting the same kind of support. She wanted to help them, the way her friends had helped her.

"I have always felt loved, but I have never been loved as much as I have been now," she said. "I can't believe how really lucky I am."

So Shelley created a program called Friends Like Mine, in which she raises money to create gift bags for newly diagnosed patients. The gift bags, which include an inspirational poem and gift certificates to Barnes & Noble, Target and Starbucks, are delivered anonymously to the patients at the clinic.

"When you get to the clinic, it's just so scary. You see people in every aspect of the disease from the beginning to the end," Shelley said. "I just wanted them to go in and have a gift of love. Just something to say that there is someone who knows what you are going through and to help them have a good day."

The campaign features people who shifted the focus of their lives after their diagnosis from seeking success to making a difference in their community, said Annie Kennedy, director of the association's ALS division.

Shelley's determination to help others made her stand out immediately among the 327 nominees, Kennedy said.

"Ever since she's been diagnosed with ALS, she has been just an incredible advocate within the community," said Autumn Kish, the health services coordinator for the association's Greensboro chapter, which nominated Shelley to be in the campaign.

Shelley will be featured today.

"I'm thrilled to be honored for doing good," Shelley said. "I wish I was not sick, but I'm grateful that through my sickness I've become aware of other people's needs."


Contact Kory Dodd at 883-4433, Ext. 241, or kdodd@news-record.com

http://www.news-record...(cropped)