Running Update:

2/12/2018	Swim	2200.0 yd
2/19/2018	Run	3.2 mi	31:27
2/23/2018	Run	5.0 mi	50:05
2/26/2018	Run	3.2 mi	30:31
2/28/2018	Run	5.0 mi	48:49
3/3/2018	Swim	1500.0 yd
3/4/2018	Run	12.0 mi	1:57:35
3/7/2018	Run	5.0 mi	48:04
3/9/2018	Run	5.0 mi	47:49
3/10/2018	Swim	2000.0 yd
3/11/2018	Run	9.1 mi	1:30:42
3/14/2018	Run	5.0 mi	47:37
3/18/2018	Run	13.1 mi	1:58:40

Today was my first race of the season, the NYC Half Marathon.  The course was a new one this year, starting in Brooklyn and finishing in Central Park.  It was cold, windy, and uphill, but I still managed to finish in under two hours!  I had missed more than two weeks of training in February due to an evil virus, so I didn’t think I’d make it under the 2-hour mark this time.  In the end, I finished in 1:58:40 which put me 203rd out of 1098 women in my age group.

Another 13.1 miles done to #endNF!

At the pre-race Expo

My name on the wall of runners!

Gear ready the night before

Running through Times Square

Coming up to give a hug to Todd and Alec

After the finish, with Neil, my running partner, Alec and Todd

The Bling

Jane Update:

Poor Jane fell while ice skating a couple of weeks ago and broke both bones in her forearm!  She’s been an extremely good sport about it, and we’re thankful it didn’t happen during soccer season or over the summer.  To be honest, it’s refreshing for me to report on a medical issue of Jane’s that is unrelated to NF.  Breaking a bone is just a Normal Kid thing to do.  Unfortunately, we’ve been instructed by our care team at NIH to stop Jane’s study medication until her arm heals.  Apparently, one child on selumetinib had some delayed bone healing after a break, so out of an abundance of caution, we’re holding the drug.  (That part isn’t a Normal Kid thing to have to consider.)

We return to NIH in less than 2 weeks for Jane’s next check-up and MRI.

Still smiling despite a broken arm!

After replacing the temporary cast with a (thankfully) waterproof one

NF Update:

I was recently reminded that it was four years ago this February that we were coming off a failed trial of Gleevec because Jane’s tumor was growing relentlessly, and we were desperate. We were offered the last spot in a clinical trial, involving only 24 children, for a new drug treatment for inoperable plexiform neurofibromas.  That drug, selumetinib, was just granted Orphan Drug status and has the potential for FDA approval.  How far we’ve come!

Here is the press release:  http://www.ctf.org/news/selumetinib-granted-orphan-drug-designation-by-the-fda-for-nf1

This is great news.  Jane (pictured in the article!) started taking selumetinib as part of Phase I of the trial. Jane’s tumor is now 30% smaller thanks to this medication. Phase II of the trial is now nearing completion, and selumetinib then has the potential for FDA approval.

Since plexiform neurofibromas are rare, to date there has not been great financial incentive for pharmaceutical companies to develop treatments for these tumors. However, Orphan Drug status means that the manufacturer of selumetinib (Astra-Zeneca) can get monetary support to continue researching and producing the drug.

And we want selumetinib to be available, not just for Jane, but for all children with NF tumors like hers!

Thank you to everyone—from our clinical team to our donors—who are helping to #endNF in our Jane's lifetime.