Monday, March 16, 2020


Running Update:
2/15/2020
Swim

2200.0 yd

2/16/2020
Run

10.2 mi
1:40:38
2/17/2020
Swim

2200.0 yd

2/19/2020
Run

7.6 mi
1:15:12
2/21/2020
Run

5.0 mi
43:35
2/22/2020
Swim

2200.0 yd

2/23/2020
Run

13.1 mi
2:08:14
2/24/2020
Swim

2200.0 yd

2/26/2020
Run

6.0 mi
55:02
2/28/2020
Run

5.0 mi
48:23
3/1/2020
Run

10.2 mi
1:42:11
3/2/2020
Run

3.2 mi
30:07
3/4/2020
Run

5.0 mi
49:27
3/6/2020
Run

5.0 mi
47:55
3/7/2020
Swim

2200.0 yd

3/8/2020
Run

10.2 mi
1:39:44
3/9/2020
Swim

2200.0 yd

3/11/2020
Run

7.6 mi
1:15:24
3/13/2020
Run

3.2 mi
30:53
3/15/2020
Run

13.1 mi
2:12:45

My first race of the year, the NYC Half Marathon, was scheduled for yesterday but was canceled due to concerns over spread of the new coronavirus.  Instead, I ran a half marathon at home, as promised!  I didn’t run at race pace since I didn’t have the usual water stops, fuel stations, pacers, or the excitement of a big race, but it was a lovely day here in Connecticut—50 degrees and sunny—so I enjoyed the run.

My unofficial half-marathon route (uploaded from my Garmin)

I’ll keep training for my next race, the Vermont City Marathon at the end of May, and hope that it goes on as scheduled.  Race or not, you can always donate to our campaign at 


Jane Update:
Back in calmer times (ie, two weeks ago) Jane and I were in New York City at the Children’s Tumor Foundation for a photo shoot!  CTF is planning a new campaign for NF Awareness Month in May and it will feature new photos of young people affected by neurofibromatosis.  There were eight NF kids and their families there that day, so Jane got to meet and interact with them, and they were all treated like celebrities.  The photographer is a professional whose son has NF, too, so he volunteered his time.   I'll be sure to share the finished products when they are published, but here is a preview.

Jane and another NF friend from Connecticut










Costume change



Right before the boys jumped up to try to be as tall as Jane :)




My Yale classmate, Simon Vukelj, who happens to help run CTF!

Adding more subjects to the photo






Look at all these fighters!


NF Update:
Jane and I are scheduled to return to NIH for a check-up, her usual testing, and more MRIs at the end of the month, but the visit is up in the air because of the coronavirus.  We are waiting to hear from our team there.  We don’t plan to fly down this time so we can avoid the crowds in the airports.  We could have the option to have her testing done at home and forward it all to NIH, but that is easier said than done.  At each visit Jane has blood work, EKGs, echocardiogram, eye exams, ear exams, dermatology exams, photographs, and MRIs.  That would be hard to arrange on short notice even in normal times, but much more difficult now that our local hospital overwhelmed with coronavirus management and not scheduling any non-emergency visits.  We don’t know what we are going to do. 

Which leads me to my public service announcement (kind of a lecture, really—but it’s my blog, so there):
This is why everyone is being told to stay home and to practice social distancing—and why you should, too!  You know how all the grocery stores have run out of toilet paper because everyone went to buy it at the same time?  That’s what will happen to our hospitals’ ICU beds and ventilators if everyone gets the coronavirus at the same time—they will run out.  There will not be enough medical resources to adequately take care of all those people who get really sick with the coronavirus at the same time, leading to even more deaths.  And there will not be enough medical resources to take care of people who have other types of illnesses, like a random appendicitis, or a heart attack, or cancer, or neurofibromatosis.

If we can slow down the spread of the coronavirus by staying home, the hospitals will be able to keep up with the sick people and will have the resources to give them the treatment they need.  (To continue the analogy, the toilet paper won't run out.)  I am speaking as a physician from inside a major health organization—this really is a big deal.  In my opinion, there is no such thing as overreacting to this virus.  Resources are already tight.  Please follow the recommendations of your state and local authorities and stay home.  Reach out to your state and local authorities if you need help figuring out what safety nets are in place if your employer is not paying you to work from home.  Think twice before leaving home for any reason—most reasons can wait.  Do it to save your own life, do it save someone else’s life.

End of lecture.  Stay safe, everyone.

Wednesday, February 12, 2020


Running Update:
1/3/2020
Run

5.0 mi
48:22
1/4/2020
Swim

1500.0 yd

1/5/2020
Run

9.1 mi
1:32:53
1/6/2020
Swim

1500.0 yd

1/8/2020
Run

5.0 mi
46:25
1/10/2020
Run

5.0 mi
49:14
1/11/2020
Swim

1900.0 yd

1/12/2020
Run

13.2 mi
2:14:22
1/13/2020
Swim

1300.0 yd

1/15/2020
Run

5.1 mi
49:53
1/17/2020
Run

5.0 mi
48:39
1/18/2020
Swim

2000.0 yd

1/19/2020
Run

9.1 mi
1:34:00
1/20/2020
Swim

2000.0 yd

1/22/2020
Run

5.0 mi
49:59
1/24/2020
Run

5.0 mi
45:30
1/26/2020
Run

10.3 mi
1:42:05
1/27/2020
Swim

2100.0 yd

1/29/2020
Run

7.6 mi
1:13:46
1/31/2020
Run

5.0 mi
45:21
2/1/2020
Swim

2100.0 yd

2/2/2020
Run

9.1 mi
1:28:52
2/3/2020
Swim

2100.0 yd

2/5/2020
Run

5.0 mi
48:00
2/7/2020
Run

5.0 mi
46:47
2/8/2020
Swim

2100.0 yd

2/9/2020
Run

9.1 mi
1:30:22
2/10/2020
Swim

2100.0 yd


Happy 2020!  My training is already off to a good start for the year, and believe it or not our first race of 2020 is only about a month away.  I’m starting the racing season with the NYC Half Marathon, as usual—this will be my sixth time running this event.

Here is my full schedule for the year:

NYC Half Marathon—Sunday, March 15th
Vermont City Marathon—Sunday, May 24th
New Haven Road Race Half Marathon—Monday, September 7th
New York City Marathon, 50th Anniversary—Sunday, November 1st

The full New York Marathon in November will be a first for me.  I hadn’t applied before because the race is just so big—over 50,000 runners, compared with about 30,000 in each the Boston and Marine Corps Marathons.  In larger marathons the runners start in “waves” of smaller groups with a short time delay between each group, but this means a long wait at the starting line for your group to be released.  Despite running in waves, with that many people you simply have less room to move.  Since I’m not an elite runner I start in the middle of a wave and stay surrounded by other runners for most of the race.  Lots of jostling and elbow-bumping!  However, I was inspired to register this year while watching last fall’s race and hearing that it would be the marathon’s 50th anniversary in 2020.  Since I turned 50 earlier this year, I figured it would be fitting for this 50-year-old to run a 50-year-old marathon!

Speaking of birthdays, I celebrated mine with Todd in New York City with dinner and a play.

"Harry Potter and the Cursed Child"
(Yes, I am a total nerd!  But a happy nerd.)

Jane Update:
After a bumpy 2019, so far, so good in 2020.  This week we had a follow up with the Pediatric Dermatologist who has been managing the persistent nail infections in Jane’s toe—a side effect of selumetinib—and I am thrilled to announce that finally, almost one full year after they started, the infections are gone!  The trick was a prolonged course of doxycycline, which is an antibiotic and anti-inflammatory.  Just to be on the safe side the doctor is keeping Jane on a lower dose of doxycycline for another month before deciding whether to stop it completely.

Now that her toes are healed, Jane can wear her new kicks, courtesy of the Children’s Tumor Foundation!  These were a thank you gift from CTF for our fund-raising last year.  NF’s “colors” are blue and green, hence the design.





Our next trip back to NIH will be at the end of March.


NF Update:
I recently discovered another NF organization, the Littlest Tumor Foundation (littlesttumor.org).
It was founded in 2010 in Wisconsin by Tracy Wirtanen when her 4 year-old son was diagnosed with NF.  (Go, NF Moms!)  Littlest Tumor Foundation is “a team of action-driven dreamers inspiring compassion, advancing research, empowering families, and raising awareness for neurofibromatosis (NF).

I learned that back in 2010 the founder got to meet with President Obama and talk about NF!  Here is a photo and the transcript from the meeting:


Tracy Wirtanen: Hi. Thank you so much, Mr. President, for having us here. I want to thank you. I just have a comment. My son, Sammy, who was here, is seven and he has neurofibromatosis. I don’t know, have you ever heard of it?
THE PRESIDENT: You know, I’ve heard of it. But you should describe for us what that means.
TW: It means that he had a spontaneous mutation on his chromosome. And he was diagnosed two and a half years ago. And it just basically means your tumor suppressor doesn’t work properly, so every nerve cell has the potential of becoming a tumor.
THE PRESIDENT: Which is pretty nerve-wracking for mom.
TW: Oh, it’s unbelievable. And there’s a wide spectrum, so some people end up with minor complications but others have serious problems. And he’s already had surgeries and things of that nature. So I just want to thank you and the Secretary and congressmen and senators, because it’s life changing for a parent.
THE PRESIDENT: Well, Sammy looks terrific. I saw him running around here.
TW: He is terrific.
THE PRESIDENT: And I’m just glad to give you peace of mind. Look, people ask me sort of how do I stay calm in my job. The reason I stay calm in my job is that every night at six-thirty, no matter how busy I am, I go upstairs -- I’ve got a very short commute -- (laughter) -- and I go upstairs and I have dinner with my wife and my daughters. And as long as they’re doing good, as long as they’re healthy and happy and running around and telling me stories about the crazy things that happened at school today, then there’s a certain baseline that just gives you that sense, well, I can take anything, right?
Now, the flipside is when Malia or Sasha get a sniffle, or an ear infection, or a scrape, or a bruise, I’m over there just miserable. And I still remember Sasha, when she was three months old, one night she just wasn’t crying right. As a parent, you start recognizing, that’s not how she cries. She wasn’t hungry, it wasn’t a diaper change. Something was going on.
So we called our pediatrician, and he said, “Well, why don’t you bring her down?” And this was in the middle of the night. This is like one o’clock in the morning. And he was willing to see her, and he pressed on top of her head, and he said, “You know, she may have meningitis; I want you to go to the emergency room.”
And it turned out she had meningitis, and she had to get a spinal tap, and they had to keep her there for three or four days. And the doctor was talking about if this didn’t -- if her temperature didn’t come down and if we didn’t solve this, she could have permanent damage to her hearing or other effects.
But I still remember that feeling of just desperation, watching the nurse take her away to provide treatment for her. But I was thinking, what if I hadn’t had insurance? What if I was looking at my bank account and I didn’t have the money to cover her? How would I be able to face my wife, and how would I be able to look in the mirror if I didn’t feel like I could somehow make sure they were okay?
And that’s what this is about, ultimately. I mean, we’ve got to make sure that health care -- our health care dollars are used smartly. We’ve got to make the system work better for consumers. We’ve got to make it more responsive. But ultimately, the thing that’s most important is, we’ve just got to give people some basic peace of mind. And I’m just so glad that I’m able to stand here before you and hear these stories, and hopefully it gives you a little more peace of mind. (Applause.)
So, all right, well, thank you, everybody. Appreciate you. And if anybody else has any questions, they can come up and we can chat in the shade here. (Laughter.) Because I don’t have to go right away, and maybe we can -- these guys will take some pictures. So thank you.

I was so excited when I first discovered that President Obama knew about NF that immediately shared the story with my friend, Dara.  She said, “I bet Michelle told him about Jane”, alluding to the letter that Jane received from the First Lady back in 2016 :)



Thinking about Barack and Michelle Obama makes me think of politics, something I don’t usually include in my blog.  But I have strong enough feelings regarding the recent publication of the controversial novel American Dirt by Jeanine Cummins that I thought I’d dip my toe in.

American Dirt is a story of a Mexican woman and her son fleeing violence in their home to become an undocumented immigrants in United States.  It has been touted by some as “the Grapes of Wrath for our time”.  However, it was written by a white American woman without any Mexican heritage or personal connection to Mexico.  I’m on the side of its critics, who have condemned it as inaccurate, called it cultural appropriation, and even described it as “trauma porn”.  It is a much more egregious example of appropriation than the “inspiration porn” of the book Wonder, about which I’ve written.  Ever since I read Wonder I’ve been more sensitive to the argument over whether there should be limits to what a novelist can write about.  This multifaceted and nuanced debate is beyond the scope of this blog, but I confess I didn’t ever think enough about it until I felt punched in the gut by Wonder.  It took me a while to figure out why I felt that way, but it came down to it’s not her story to tell and more importantly, it’s not her story to profit from.


Helen Update!
On a much brighter note:  Jane’s older sister, Helen, is a high school senior this year, and just learned that she was accepted Early Decision at Mount Holyoke College.  We are so proud of her and so happy for her!  MHC Class of 2024, here she comes!







PS  Thanks to EC for her editing advice <3