An Upcoming Race, a New Drug for NF, and a Book of Poetry

Running Update:

Running YTD:     153.3 mi             24:57:14

 

Just over two weeks until the NYC Half Marathon on 3/16 and just over two months to the London Marathon on 4/27!  I’m enjoying training in the warmer weather this week.

Now is the time to donate to our races!  www.krath4jane.com

NF Update:

A second drug has been approved by the FDA for the treatment of NF!

Readers of the blog will recall that Jane was part of the original clinical trial of the MEK inhibitor selumetinib which went on to become the first ever drug approved for the treatment of NF, specifically for inoperable plexiform neurofibromas in children.  And now another drug is available!  Mirdametinib is another MEK inhibitor, and which was approved for both children and adults.

It’s because of donors like you that we have made it this far!  And we continue to hope for more breakthroughs to come.

Advocacy Update:

Last month I attended a mini college reunion in New York where I bumped into my classmate Tami Luchow. 

Tami has just published a book of poetry, Poems for a Memory!

Tami spent many years as a journalist with NBC news, but now is a diversity consultant, aspirational speaker, and writer.  She was born with a physical disability, and she uses her life experiences to guide her work.  She runs leadership workshops; diversity, equity, inclusion, accessibility and belonging workshops; and motivational workshops nationwide. Her programs help companies make sure that each and every voice is heard for the betterment of the whole.  (Her site: tamiluchow.com)

I can’t reproduce her poems here (Buy her book!) but I can tell you that they have strong focus on empathy—emphasizing its importance, describing the harm when it’s lacking, rejoicing in it, teaching it.

Empathy is such an important sentiment.  And awareness is the foundation of empathy, which is why our work (bringing awareness to our causes) is so important!