Memoir Update: May 2026

Hello friends,

Once again, lots to report! This remarkable journey continues to take me to all sorts of unexpected places.

I suspect there are many new subscribers to this newsletter. If you haven’t already, please consider leaving a review of my book on Amazon or Goodreads. It helps! And if you’d prefer not to receive these updates, you can unsubscribe using the link at the bottom of this page.

Many of you have asked when my TED Talk will be published. Here’s the answer: on June 26th. It will also be featured on the TED Radio Hour in late July.

I’ll send a special note to this list when it goes live, and would love your help in spreading the word. More details to come…

And now, here’s where May took me:

In early May, I was honored to deliver the Hugh Allen Lecture at Texas Children’s Hospital Heart Center. You can see a video of my talk here.

It was wonderful to speak with such an engaged group of clinicians. A highlight was meeting the cardiology fellows, who were particularly engaged and interested in bringing humanity to the bedside (and, of course, trying to bring that bed outside!)

One of the fellows I met had brought a hardcover copy of my memoir for me to sign. “I was ready to quit medicine two years ago,” she told me. “And then someone gave me a copy of your book.”

Wow.

But that wasn’t all.

During my talk, I’d mentioned how unusual it was to see so many white lab coats among the doctors in attendance.

It’s true that studies have shown that some patients are comforted by the authority that a white lab coat seems to confer on its wearer. But in my opinion, it creates a power imbalance that negatively affects the ability of parents and clinicians to collaborate as peers. (Not to mention that white coats can be teeming with bacteria.)

Apparently, a few days after my talk, Texas Children’s Heart Center decided to stop wearing lab coats when consulting with patients, in favor of more casual (and in my opinion, approachable) quarter-zips.

Wow, again.

But wait … there’s even more.

A few weeks later, the director of TCH’s Heart Center called me with a checklist of all the things I’d advocated for in my talk: name badges, trading cards, getting kids outside — everything. She was kicking off a project to examine the feasibility of putting these things into practice, and wanted my input on how they might do so.

Being able to share our story with clinicians has been rewarding enough. Seeing how it can have a direct impact on how they care for similar kids is … absolutely incredible.

May also brought something new: a visit to DC, where I did a little lobbying.

The event was organized by an alliance of CHD-focused organizations, foundations, patients and advocates called Every 100th Heart.

I met dozens of inspiring patients, parents, clinicians and scientists committed to helping families affected by congenital heart defects. (I was also invited to briefly share what I knew about effective storytelling ... which only took a few minutes 😀)

On Wednesday, we went to Capitol Hill to share our stories with our representatives and senators. I was one of six fast-talking, streetwise New Yorkers who visited the offices of Senators Chuck Schumer and Kirsten Gillibrand as well as representatives Dan Goldman, Nydia Velazquez and Jerry Nadler. (I needed to catch the Amtrak home, so unfortunately wasn’t able to visit my representative, Nicole Malliotakis.)

This was the first time I’d ever done anything like this (at the Times, we were even discouraged from signing petitions) and it was inspiring to play a tiny part in shaping the political conversation. Can’t wait to do it again next year.

The month ended with an event we’ve organized for the last eight years — an annual Grand Rounds lecture at Mount Sinai in memory of our son Nadav.

This year’s speaker was the inspiring Dr. Yves D’Udekem of Children’s National Hospital in Washington, DC, who spoke about “Asking the Right Questions in Pediatric Research: Insights from Work Across Five Continents”.

It was a fascinating and inspiring talk, echoing Nadav’s own quiet, independent wisdom. Unfortunately the video is not available yet but I’ll post it on Linkedin and Facebook shortly.

The initial funding for this series of lectures came from donations from friends and family after Nadav’s death nine years ago. We are incredibly grateful.

This has been a long update. (If you made it this far, I hope it was worth it!) There is so much going on — and while it can feel a little overwhelming, I feel so blessed to have the opportunity to do such meaningful work. I couldn’t do it without the support and encouragement of all of you.

So thank you for all you’ve done to make this magic dream a reality. Can’t wait to see what comes next!

As always,

James