Chapter 5: Love At First Zoom
Quick Note: We have met a lot of people on this journey. Carol Hamilton is the VP of Development for ALS TDI and the CEO of awesome. We asked her to write an update for our blog, and she overdelivered as always. Carol, we love you. ~ Kevin and Tessa
Carol Hamilton, Abby Albright, Fernando Viera, Kevin, Tessa, and Lori Larson-Heller
Almost 18 years ago, I met Jamie Heywood, whose brother, Stephen, had been diagnosed with ALS at 29. Jamie was, and is, a brilliant, audacious, and gumptious guy whose love for his brother has had a true impact in the fight to change the future of ALS. To address the need to identify treatments for the disease, Jamie and his family founded the ALS Therapy Development Institute (ALS TDI) in their suburban basement.
ALS TDI is now the largest independent ALS research institute in the country.
I met Jamie after a friend’s brother had been diagnosed with ALS. Unsure if and how I might play a role in the cause, this former fashion executive and then stay-at-home Mom sat captivated by all I was learning from Jamie. Finally taking a breath, he said, “So, do you want to help change the world, or not?!”
It was a brilliant, audacious, and gumptious question. Stuck, I laughed and asked what his new world might look like. He said, “one in which people with ALS live.”
Ya. I wanted to help bring about the change to live in that world.
In the 18 years since I have worn many a hat in the fight. And I have met hundreds, if not thousands, of people living with ALS. With every ounce of my being, I look forward to, someday soon, living together in that new world.
For 18 months of those 18 years, I have been in love. And it happened fast.
It was love at first Zoom.
Kevin had reached out to ALS TDI, and within hours, he and Tessa filled my screen. They were young, smart, funny, warm, and eager. Ordinarily, in most peoples’ lives, meeting young, smart, funny, warm, eager people might offer a tinge of excitement … visions of future excursions and adventures with newfound friends. It’s different with ALS. Especially when, after 18 years, you know what lies ahead for such magnificent people.
And, this was more than that. These were not newfound friends. They were newfound family. It just happened. Right there on Zoom. The immediate love one feels, I imagine when meeting an adopted child, a long-lost relative.
With any feeling as intense as love comes others. On that same Zoom, Kevin and Tessa told me that they’d been trying to start a family for years and that, given Kevin’s diagnosis, they were delaying a second round of IVF. My heart plummeted into my gut. Truly, I felt it physically. About to be overcome with tears, I pretended my doorbell rang so I could hang up and call them back after I pulled myself together (I don’t know that I’ve ever told them this, so…sorry I lied to you on our first call, K&T). Despite my years in this world, I do not get used to the losses people suffer at the hands of this monster. And this one still tears my heart out every single day.
That day, I asked Kevin if he would be willing to serve on a panel at a pharmaceutical company. Before I completed the question, he said yes. They then said, “Anything you ever want to ask us to do, the answer will always be ‘yes’. And it has.
George Albright , Kevin, Tessa, Abby Albright, Carol and Fernando Viera
Sit on a panel? Yes. Speak at a gala? Yes. Travel across the country? Yes. Host an event? Yes. Sometimes, they get to ‘yes’ before I even come up with the question. Like when they committed to co-hosting the A Love Story gala event in Minneapolis, raising more than $700,000 for ALS TDI.
Here are my “yes’s”:
Will I love you forever? Yes.
Will I work my ass off every day to change the future of this disease that has taken so much from you? Yes, yes, yes.
Am I grateful for the love I believe you return? Yes. So, so, so very grateful.
And, for everyone reading this, I wish you so many yes’s in your lives. And, Love At First Zoom … without the world’s most horrible disease getting in the way.
Carol
Carol and Fernando Viera