Two years ago, Patty Haberstroh was diagnosed with ALS.
She did not take the news lying down.
Neither did her family.
Together they embarked on the #ALSPepperChallenge. Across the country, people — from national celebrities like Shaquille O’Neal, Charles Barkley and Dan Le Batard to local ones like the Staples High School principal and first selectman — ate habaneros and jalapeños, raising nearly a million dollars to fight what is also called Lou Gehrig’s Disease.
In addition, 2 of Patty’s sons — Chuck and Steve — joined the IAmALS advisory board.
This morning, they rose early. With their friends — current and former Westporters Chris Aitkin, Matt Cook, Ben Erwin, Chris Kenyon, Steve O’Dell, Stacy Rosenthal and Raffi Tokatlian — they joined 150 others as IAmALS “took over” nearly a dozen billboards in Times Square.
Steve and Chuck Haberstroh, helping change the world for their mom.
Their messages brought attention to the fight — and spread the message that ALS research can also unlock critical breakthroughs for diseases like Alzheimer’s, Parkinson’s and multiple sclerosis.
Some of the messages were hopeful. Some were educational. Some were defiant.
All are crucial.
Bad weather kept Patty Haberstroh from attending the Times Square event this morning. Her husband — Parks & Recreation Commission chair Charlie Haberstroh — and daughter Kim watched the livestream at home. So did their son Tom, in Charlotte, North Carolina with his family.
It’s been a year since Patty Haberstroh’s family started the Hot Pepper Challenge, to raise funds for ALS. Three months earlier, she’d been diagnosed with the neurodegenerative disease.
It’s been 3 years since the Frates family first did the Ice Bucket Challenge, for the same important cause.
This morning, Patty — the energetic, creative program specialist in Westport’s Human Services Department — her family, and the Frateses, were in New York. They rang the opening NASDAQ bell, in their continuing efforts to raise both funds and awareness of ALS.
They were joined by Westporter Paul LaHiff and his family. He too has ALS (also called Lou Gehrig’s Disease). Also on hand: ALS Foundation members, and representatives of the company that produces the Radicava drug.
Paul LaHiff (front, left) and Patty Haberstroh (front, right), with families and friends, this morning on the NASDAQ floor.
The ceremony was televised live on CNBC. And in case anyone missed Patty with her pepper shirt — well, look here:
Patty continues to advocate for ALS causes — and treatments. Yesterday, she was interviewed by WSHU. Click here for that inspiring story.
Last Sunday, Sherwood Island State Park hosted an ALS Walk. Among the thousands of participants, 70 formed a special team.
Dottie Kyle’s husband Bob is a 1964 graduate of Staples High School. She has ALS — Lou Gehrig’s Disease — and the “Go Dottie Go!” team came from around the country to support her.
David Knapp is a longtime friend of the Kyle family, who lives near them in North Carolina. On his way to Westport, he realized he had forgotten to raise any money for the event.
He quickly emailed some close friends. He promised that if he could raise $1,000 within the next 24 hours, he’d wear a tutu at the Walk.
He did, and he did. Here he is, with Dottie:
Dottie is no slouch either. Since August of last year, her ALS has progressed from her chest and throat muscles to her legs.
But she wanted to be involved with her support group, so on Sunday Bobby pushed her in a wheelchair.
Twenty feet from the finish line she raised herself out of her chair, grabbed the arms of her daughter Krissy and son Brian, and walked over the finish line.
They don’t call it the ALS “Walk” for nothing.