Wendler family celebrates 'Right To Try' bill becoming law in honor of mother who died with ALS

Janesville Gazette - 4/1/2018

April 01--MADISON -- The Wendler family is well traveled. But over the last few years, it's been out of necessity.

Tim Wendler recalled his wife, Trickett, coming home in 2013 from a business trip in California with a limp and feeling fatigued. After several visits to doctors and specialists, a neurologist diagnosed her with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease. It is the same sickness her father, Roger Fewell, died with in 1997.

The family "became desperate," Tim said in a phone interview Friday. The couple went across the country--to Boston, Houston, Indiana, Los Angeles and Atlanta, to name a few spots--to speak with doctors. But because there is no cure, an ALS diagnosis is "a death sentence," the Janesville native said.

So the family, which includes three young children, sought more trips across the country and cruises to make memories together while it still could.

Advocacy work also brought the Wendlers to the nation's capital to speak with U.S. Sen. Ron Johnson, R-Wis., and Vice President Mike Pence. The family pushed for Right To Try legislation, which allows terminally ill patients the opportunity to try potentially life-saving treatment options if they so choose.

Last week, the Wendler family made a trip to Madison. On Wednesday--3 years and 10 days after Trickett died at age 41--Gov. Scott Walker signed into law Wisconsin's own Right To Try bill alongside Tim and his children Tealyn, 14; Tanner, 12; and Torynn, 10.

The Wisconsin law allows patients with life-threatening diseases or conditions to use an investigational drug, device or biological product if they have "exhausted approved treatment options and (are) unable to participate in a clinical trial," according to Walker's office.

Tim emphasized the law is voluntary, but it offers families hope if a patient and doctor are in agreement. The treatment does not need to pass all phases of U.S. Food and Drug Administration checks, just the first one, Tim explained.

"I'm not naïve enough to think that, if the bill was in place, Trickett would be alive," he said. "But it certainly would have given us hope when we ran out."

Hope started to fade for the Wendlers as they bounced around legislators' offices in 2014, Tim said. But when the family spoke with Johnson about the Right To Try bill, Trickett started to cry.

It was a "glimmer" of hope, Tim said.

Though Trickett died in March 2015, Johnson remained passionate about the bill, Tim said.

With direction from Johnson, the U.S. Senate passed the Trickett Wendler Right to Try Act in August. The House of Representatives passed a different version of the bill last week.

The two governmental bodies will have to reconcile the bill before sending it to President Donald Trump's desk. In a visit to Washington D.C. last year, Tim said Pence told him their administration supported the bill.

Back in Wisconsin, state Rep. Don Vruwink, D-Milton, joined the family at the signing in Madison. Vruwink was one of Tim and Trickett's teachers at Milton High School, where he also coached Tim in basketball and had Trickett as an aide in his social studies office, according to Walker's office. Tim said the family now lives in Pewaukee.

Walker signed Senate Bill 84 with multiple pens, leaving the Wendler children with mementos from the day.

But the children haven't sat idly by as their father went into meeting after meeting. Tealyn, in particular, has spoken at public hearings and has been a passionate advocate herself, Tim said.

"Of course Trickett is looking down every day and just smiling," he said. "Because she couldn't be prouder, I'm certain, of the work Tealyn and Tanner and Torynn have continued on her behalf."

With Wisconsin's law on the books, and hopes the federal government will soon follow, Tim said there still is deep urgency as he has yet to accomplish his "single mission in life."

ALS can be hereditary, and Tim said he can't sit by for 10 or 20 years and see--"God forbid"--his kids receive a diagnosis with the same treatment options available today.

"I can't slow down," he said. "There's nothing more important in life than finding a cure for ALS.

"That's where we can declare victory. Not until then."

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