I was diagnosed with ALS (Lou Gehrig’s Disease) in October 2017. I had been dragging my right foot for several months, fearing what that might mean from going online. But nothing prepares you for the shock of the diagnosis: 2-5 year average lifespan from diagnosis. I’m determined that will not be me!
One of my friends in Westport, CT, has ALS and she referred me to biotech company ALS TDI in Cambridge, MA, as a nonprofit biotech solely focused on FINDING A CURE. This is what I and so many others need. Their motto,
“ALS is not an incurable disease. It is an underfunded disease”,
is certainly true, the more I learn about the disease.
So…my kids felt they couldn’t remain powerless. My son, Tom, worked for ESPN for years and knew a lot about how to work social media. Thus, “Peppermint Patty” became “Pepper Patty” which became the “ALS Pepper Challenge”. We estimate around 1000 folks have done it so far. As of this morning (1/31/2018), we’ve raised over $85,000.00, which will go directly to help fund a clinical trial for a promising drug TDI has been working on with their 36 scientists. Our goal of $1 million is ambitious, but that’s what it takes to get the trial started.
I’ve been so touched by the caring of so many who took the challenge—celebrities (Garth Brooks, Trisha Yearwood, Andy Cohen, Shaq, Charles Barkley), groups (Westport Town Hall staff where I work, Westport Board of Education, Westport Library staff), people I don’t know living with ALS, as well as groups of my friends.
The most touching are the kids of my kids talking about how I affected their lives growing up, in ways I never knew—other than feeding them. We’ve had many laughs as people use their creativity in the videos—there’s some crazy stuff.
There’s been joy for me coming out of this. I’m told I’m a “slow progressor” and that gives me great hope – but it could change at any time. So much is unknown. I love the pepper crunches but we do need the money for research.
Here’s the link to donate: www.als.net/pepper–
Update from Patty on 03/26/2018:
Our fundraising total has grown to over $550,000.00 — far beyond my wildest dreams! Our goal is to provide enough money to move a promising drug literally out of the freezer in Cambridge and into human trials. That takes a lot of money.