Running Update:
|
3/19/2019
|
Swim
|
|
1500.0 yd
|
|
|
3/20/2019
|
Run
|
|
5.0 mi
|
49:21
|
|
3/22/2019
|
Run
|
|
5.0 mi
|
48:24
|
|
3/23/2019
|
Swim
|
|
2100.0 yd
|
|
|
3/24/2019
|
Run
|
|
16.1 mi
|
2:43:33
|
|
3/26/2019
|
Swim
|
|
2100.0 yd
|
|
|
3/27/2019
|
Run
|
|
7.3 mi
|
1:13:05
|
|
3/29/2019
|
Run
|
|
5.0 mi
|
49:40
|
|
3/30/2019
|
Swim
|
|
2150.0 yd
|
|
|
3/31/2019
|
Run
|
|
10.2 mi
|
1:43:16
|
|
4/2/2019
|
Swim
|
|
2100.0 yd
|
|
|
4/3/2019
|
Run
|
|
6.0 mi
|
51:12
|
|
4/5/2019
|
Run
|
|
5.0 mi
|
47:36
|
|
4/7/2019
|
Run
|
|
18.0 mi
|
3:01:44
|
|
4/8/2019
|
Swim
|
|
1500.0 yd
|
|
|
4/9/2019
|
Run
|
|
3.2 mi
|
28:13
|
|
4/10/2019
|
Run
|
|
5.0 mi
|
47:41
|
|
4/12/2019
|
Swim
|
|
2100.0 yd
|
|
|
4/13/2019
|
Run
|
|
10.2 mi
|
1:45:27
|
|
4/14/2019
|
Swim
|
|
1500.0 yd
|
|
|
4/16/2019
|
Run
|
|
4.8 mi
|
44:59
|
|
4/18/2019
|
Run
|
|
4.6 mi
|
44:02
|
|
4/19/2019
|
Run
|
|
4.4 mi
|
42:28
|
|
4/23/2019
|
Run
|
|
2.1 mi
|
20:31
|
|
4/24/2019
|
Run
|
|
20.1 mi
|
3:41:07
|
|
4/27/2019
|
Run
|
|
5.0 mi
|
48:00
|
|
4/28/2019
|
Run
|
|
5.0 mi
|
47:45
|
Less than a
month until the Vermont City Marathon. I’ll
be running 26 miles on May 26! I have
one more 20+ mile training run this weekend, then I start to taper. It’s nice to have the spring weather arriving
in time for my long runs. You can always donate to our campaign at www.KRath4Jane.com
NF Update:
Some
exciting news this month regarding Jane’s study medication, selumetinib. One year after being
granted orphan drug status, the US FDA has granted Breakthrough Therapy
Designation for selumetinib to treat pediatric patients with NF1 and plexiform
neurofibromas. This means that selumetinib is put on a “fast track” for approval,
and it guarantees more intensive help from the FDA to meet that goal. Here are some of the social media posts about
the announcement, including one from the National Cancer Institute featuring
Jane’s medical team, and one from the Children’s Tumor Foundation featuring
Jane herself!
 |
| Jane's medical team at NIH NCI Pediatric Oncology |
 |
| A picture of Jane's friend, Travis, who is in the same clinical trial! |
 |
| Our own Jane is featured in the CTF |
In other NF
news, the Atlantic has produced short documentary about NF celebrity Adam
Pearson and his identical twin brother, Neil.
Although
they share the same DNA, their appearances are vastly different; each suffers
from neurofibromatosis, but the condition has affected them in divergent ways.
They tell their story in this deeply moving 11-minute video.
At one point
in the video, Adam’s mother comments that when Adam was a small child, before he
was diagnosed with NF, “I noticed something, when he would eat sometimes that
side of his face used to redden up and I took him to the doctors and they said,
‘No its fine, it’s a blocked saliva gland.’” This struck a chord with me because it is exactly what we noticed about Jane when
she was just six months old, and we got the exact same response from a doctor.
Jane (and family) Update:
April was a
busy month for Jane and our family.
First of all, Jane turned 12!
 |
| Opening presents at home |
 |
| Birthday ice cream with friends |
Then our
family spent our April break in Iceland, a first time visiting this country for
all of us. With volcanoes and glaciers
side by side, it truly is the Land of Fire and Ice!
 |
| Rainbow over Reykjavik as seen from the tower of Hallgrimskirkja |
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| Hiking Thingvellir National Park |
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| Gullfoss waterfall |
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| Basalt columns at Reynisfjara |
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| The black sand beach of Reynisfjara |
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| Skogarfoss waterfall |
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| Hiking the Fimmvorduhals trail |
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| Rejkjadalur hot springs hike |
Finally,
Helen attended her high school Junior Prom this past weekend. The rain held off just long enough for us to
get some great photos of her and her friends <3
#spacebuns #glitterroots
 |
| Our beautiful daughter <3 |
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| With best friends |
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| Having fun! |
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