June and July

Running Update:

June run                           93.4 mi               15:32:29
June swim                        10.2 mi               7:20:00
 
July run (to date)             90.0 mi               15:08:52
July swim (to date)         7.2 mi                 5:21:00

The summer has been busy so far.  With work and training and with all three kids home, I haven’t had a chance to blog.  I’m happy to report that I’m keeping up with my running schedule, and that the limiting factor in my training has not been my knee, but the heat and humidity!  I’ve been able to manage my weekly long runs by starting in the early morning and by strategically placing water bottles at various points on my route the night before :)

Jane Update:

We didn’t get the final results of Jane’s last MRI until the end of May, but were pleased to learn that her tumor is still officially stable.

During our visit at NIH this spring, our team discovered a new defect in Jane’s vision, but we hadn’t budgeted enough time in our trip to see the ophthalmologist at NIH.  Back at home had to scramble to see our own ophthalmologist semi-urgently, which led to several stressful days.  (Aside:  I hate the whack-a-mole nature of this disease.  NF is relentless.)

The good news is that it turns out there is no new NF complication.  Phew.  She just needs glasses!  She wasn’t thrilled, but at least it’s not another GD tumor.  And I told her I would get (reading) glasses with her in solidarity, since I’ve been putting that off for a couple of years now.

Jane's selection.
(She would not pose for a photo wearing them!)

NF Update:

A milestone for NF: a prominent advertisement in the New England Journal of Medicine!  I was leafing through a recent copy of the NEJM and the word “plexiform” caught my eye on the back cover.  It turned out to be a commercial by SpringWorks Therapeutics, which is trialing another MEK inhibitor, mirdametinib.  (Jane takes selumetinib, the first MEK inhibitor approved for NF.)  Seeing the promotion of NF therapies in a place where I’d normally see advertisements for diabetes and blood pressure medicines made me feel like we’ve reached a new level of NF awareness <3

Back cover of the 7/11/24 issue of the New England Journal of Medicine

On that note: DON’T FORGET TO DONATE TO OUR BERLIN MARATHON CAMPAIGN!  The link is right here:

www.KRath4Jane.com

It’s because of donors like you that more and more research is being done into new therapies for NF!