Running Update

4/6/2020	Run		7.6 mi	1:14:51
4/8/2020	Run		5.0 mi	48:10
4/10/2020	Run		9.4 mi	1:33:40
4/13/2020	Run		7.6 mi	1:15:06
4/15/2020	Run		5.2 mi	51:38
4/17/2020	Run		9.1 mi	1:32:38
4/20/2020	Run		5.0 mi	48:17
4/22/2020	Run		7.6 mi	1:15:02
4/24/2020	Run		9.1 mi	1:31:32
4/27/2020	Run		5.0 mi	49:09

Still running while staying safe during this pandemic.  I’m registered for the New Haven Half-Marathon on Labor Day and the New York City Marathon on November 1st, but there’s some skepticism in the running community that any of the big fall races will go on as planned.  (Dumb Runner author Mark Remy puts it this way:  “Adorable Child Still Believes in Tooth Fairy, Unicorns, 2020 Fall Marathons”)  For now I’m just enjoying my runs and holding off on training until the summer.

NF Update

This big news this month, of course, was FDA approval of selumetinib, the study drug Jane has been taking for the past six years!  We are thrilled, especially after all Jane has been through to get to this point.  We got a lot of news and social media coverage, starting with this announcement from the Children’sTumor Foundation:  www.ctf.org/first-drug-approved-for-nf.  It featured a video of Jane and me and our comments about the approval. 

Here is the official FDA statement:

www.fda.gov/news-events/press-announcements/fda-approves-first-therapy-children-debilitating-and-disfiguring-rare-disease

Our picture even made it onto Cancer.gov!

Selumetinib’s brand name will be Koselugo (pronounced co-sell-you-go), manufactured by AstraZeneca (www.koselugo.com). As my friend Simon Vukelj at the Children’s Tumor Foundation told me, “You'll recognize the 'selu' from 'selumetinib' in 'koselugo'.”

You might say that there’s been a “selu-bration” in the NF community this month :)

The words that meant the most to me were from another NF Mom:  I am so grateful to all who made this bold and courageous decision to enroll their child in the clinical trial for selumetinib; the kind of choice that a parent should never have to make, but that they are grateful to have available when there is nothing else. 

We also received this letter from our team at NIH.

Jane Update

Jane is staying healthy, busy enough with distance learning from her school but enjoying extra time for reading and watching movies and taking walks with the family.  So far her local MRI is still scheduled for mid-May—we’re hopeful it will go as planned.

Keep an eye out for lots more pictures of Jane during the month of May--NF Awareness Month!

~~~

Finally, I’d like to dedicate this blog post to Jane’s Grandpa Bob, who passed away this month.  Today would have been his 91 st birthday.  He was a true gentleman-- kind, considerate, and unassuming.  Our lives won’t be the same without him.  He could always be heard whistling happily, and I won’t ever be able to listen to this song without thinking of him.

Three generations of Robert Constable