Sagle family coping with ALS wins Crapo's support

SANDPOINT -- U.S. Senator Mike Crapo is enlisting in a campaign to establish an ALS registry at the Centers for Disease Control and Prevention after meeting a Sagle family coping with the disease.

Steve Browning went with his family to Washington, D.C., earlier this month to advocate for the registry, which is designed to help identify the incidence and prevalence of the disease.

Amyotrophic lateral sclerosis, or ALS, is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. Its cause is unclear there is no known cure for the deadly affliction, perhaps best known as Lou Gehrig's disease

Browning, a 43-year-old diagnosed with the disease several years ago, had previously met with aides of the Idaho Republican and believes face time with the senator ultimately helped win support for the registry initiative.

"This time we got to see him face-to-face and I think that made every difference in the world," Browning said upon his return from the capitol.

Browning's wife, Sonja, and their 9-year-old son Brock, accompanied him on the trip to Washington, D.C. Browning said they emphasized the effect the disease has on families. Browning added that his son, who is fully aware of the implications of his father's illness, is becoming a potent ALS activist in his own right.

"He has stepped up to the plate," Browning said of his son.

The family's meeting Crapo clearly made an impression.

"I enjoyed having the opportunity to meet with Steven and his family, and I am impressed with his bravery in battling ALS," Crapo said in a statement. "The establishment of a national registry is critical in battling this disease because there is no known cure. It will help to identify ALS patients and collect data for research, disease management and the development of standards of care."

The bill has cleared the U.S. House of Representatives and the goal is to get it through the Senate.

"Right now we have 70 cosponsors in the Senate. It's looking good," Browning said.

Browning was diagnosed with ALS in 2005, after discovering he was having difficulty pronouncing certain words and experiencing numbness on the right side of his face.

The progression of the disease has fortunately been slow for Browning. He still works as a deputy clerk for Bonner County and shows no outward signs of ALS apart from a slight speech impediment.

Browning said about 50 percent of ALS sufferers die within about 18 months.

"I'm already beating the odds," he said.

•••

North Idaho ALS group

The Evergreen Chapter of the ALS Association hosts a support group in Coeur d'Alene on the second Tuesday of each month.

The meetings last from 5:30-7:30 p.m. and are held in Coeur d'Alene Fire Department station No. 3, located at 1500 15th Avenue.

• For more information, call 1-866-STOP-ALS or visit the Evergreen Chapter's Web site (webwa.alsa.org).

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