Our Newest Hero

As we started to focus in on the Les Turner ALS Foundation as a potential beneficiary of the fundraising efforts of A Long Swim, the women who run the Foundation invited me to take a tour of the ALS research area at the Northwestern University Feinberg School of Medicine.  The Foundation is one of the important funding sources for that research, so they wanted to show me where the money we might raise would go.  Before my dad died, he had specified that his brain and spinal cord be donated to the Feinberg School, so I was curious to see the research labs and eagerly accepted the invitation.  I had no clue what I was in for.

Now, I have met some pretty intense and competitive people in my life.  I have known gifted athletes, including Olympic and open water swimmers, as well as brilliant scholars and incredibly successful businesspeople.  The woman I met who runs one of the ALS research labs at Northwestern, though, took the word “intense” to a whole new level.  Her passion and dedication to finding the causes of this horrible disease is like nothing I have ever seen.

She is so unassuming that you wouldn’t even notice her on the subway (in fact, the first thing you see is her fabulously curly hair).  She is barely five feet tall and she speaks with a soft accent.  Then she began to talk about her research, and I saw that this woman has the heart of a lion and her intensity knocked me on my heels.  Just as an example, her team is making breakthrough discoveries by doing cellular-level biopsies on motor neurons of mice, the whole brain of which is half the size of a pea.  After a couple of hours with her, it was clear that we had found a very special person, and that she was our newest hero.  There simply wasn’t a question that we were going all-in for the Foundation and Northwestern.

ALS research moves at a glacial pace.  ALS patients’ motor neurons fall to pieces in a matter of months, but the research to analyze that deterioration down to the level of individual genes is painstaking and takes years for measurable results and analysis.  The team at Northwestern is doing work on human samples that they have saved since the early 1980s.  It is a special person who can fight that fight, every day, for years at a time, and maintain a positive attitude and passion for what they do.  Ironically, the only other people I have met who are able to persevere every day and remain optimistic are my family members who battle ALS.

As if that weren’t enough, she then made an individual donation to A Long Swim.  I sent her a card, thanking her for being such an inspiration for this crazy swim and fundraiser, which she followed up with the following message that I received on Facebook.  I have bracketed some language to protect her privacy.

Dear Doug

I got your wonderful card.. What a nice and brave heart you have.. You do not yet know this but I gave a talk at [an ALS medical meeting] and they offered me [a very handsome] honorarium for my lecture. I told them to donate to you instead of giving to me.. also my husband (___) must have made a donation recently.. He is also telling his friends at work.. We support you not only with our dollars but with our heart and that’s why we know you will succeed..

please take care

 [My Hero]


Words simply cannot describe how blown away I am at this.  I will spare you the bulk of my response, but will share this:

To redirect your honorarium to A Long Swim is positively humbling.  I am not articulate enough to express my gratitude.

The donations are really rolling in.  Including the Medtronic match, I think we are at $70,000 all-in and climbing.  No matter what the final number, I will wish it could be more for your research.

Susan and I have four children, and I can only hope that if even one of them will be as passionate and inspired about something – anything! – as you are about your research, then we will have been successful parents.

Thank you again, and all the best – Doug

It is fair to say that every friend of A Long Swim should adopt her as their newest hero, too.

See you at the lake.  I will report back.