Training for new job, PV native sees father’s legacy for ALS patients

John Golson, center, and wife Emily, standing to his left, with U.S. Rep. Dennis Moore and other Kansans prior to the 1999 ALS Association luncheon in Washington, D.C.

After years living in New York and traveling the country to perform in plays and musicals, Prairie Village native Grant Golson recently returned to the area to settle down with his wife Liz as the two prepared to start a family together.

And as Golson started training for a new job in the insurance industry, he came across a stark reminder of the impact his father John had on the world — even 12 years after he died of amytrophic lateral sclerosis, Lou Gehrig’s disease.

Grant Golson

While reviewing regulations about Medicare benefits for the disabled, Golson found a unique rule that allows ALS patients to begin receiving Medicare benefits immediately. Most people have to wait two years after they’ve been qualified as disabled before Medicare benefits kick in. The rule is a huge benefit to patients and families coping with ALS, which can quickly ravage the body as medical bills for treatment pile up.

“I came across this rule, and I mentioned it to my mom because I thought it was so unique — there is really only one other condition that gets the same kind of treatment under Medicare rules,” Golson said. “She said, ‘You know, your dad played a pretty huge role in getting that passed.'”

By 1999, ALS had confined John Golson to a wheelchair, but it hadn’t sapped him of the energy to be an advocate. Even as the disease made him weaker, he became deeply involved with the area’s ALS Association Keith Worthington Chapter. That year, the national ALS Association worked with a number of elected officials — including then-U.S. Rep. Dennis Moore — to put on a legislative luncheon to build support for the ALS Medicare rule.

John and his wife Emily Jennings traveled to D.C. for the event — and John prepared a speech to be delivered in front of the assembled congressmen and senators. John was too sick to read the speech, so Emily delivered it, painting a firsthand account of the impact of the disease and the benefits a new Medicare rule would have on families facing it.

The event had its intended impact: Within a year, the ALS Treatment and Assistance Act was law.

Golson said the chance encounter with his father’s legacy to ALS patients has renewed his vigor in helping raise funds to battle the disease. He’s presently organizing a “Golsons Greyhounds” team for the annual Walk to Defeat ALS, setting a goal to raise $10,000.

“My dad was lucky in a lot of ways — his company took good care of him, and he had support from friends and family,” Grant said. “But he saw people from all walks of life who were battling ALS, and wanted to make things better for them.”