Please support Epidermolysis Bulosa research as I run the NYC Half Marathon

asax3kasax3k Posts: 8
edited March 2018 in Vitalogy
https://www.crowdrise.com/o/en/campaign/team-eb-nyc-half-2018/amitsaxena1

I've posted before, but our cousins' daughter, Makenzie Cadmus was born with Recessive Dystrophic Epidermolysis Bullosa, which thanks to the EV and band is becoming more visible.  Every day is a challenge, but our meaty little ravioli continues to persevere and she is currently in Minnesota receiving chemo in anticipation of an experimental bone marrow transplant.  This treatment is not a cure though, and funds are badly needed for EB research - this is the type of disease that one breakthrough could change the outlook for individuals who average only a 30 year life expectancy.   

So I decided to run my first ever half marathon with the EB Research Partnership at the 2018 NYC Half in support of Makenzie and all EB kids on March 18th.  I've been using the training to catch up on some bootlegs which have helped me go and make the road less long (don't get me started, I've got a million of 'em).


Thanks!!

For more info on Makenzie:
Post edited by asax3k on

Comments

  • helplessdancerhelplessdancer Posts: 5,229
    good on you and everyone for supporting this cause! and of course especially ed and his wife
    this is tough to watch but needs to be. rip JP

    Jonathan Pitre: 2000-2018

    https://www.youtube.com/watch?time_continue=4&v=XZnh1vyj_-0
  • BLACK35BLACK35 Hanover, Ontario Posts: 22,260
    good on you and everyone for supporting this cause! and of course especially ed and his wife
    this is tough to watch but needs to be. rip JP

    Jonathan Pitre: 2000-2018

    https://www.youtube.com/watch?time_continue=4&v=XZnh1vyj_-0
    Was just going to post about Jonathan...RIP
    2005 - London
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  • PapPap Aspra Spitia, Greece Posts: 27,525
    Ooh, yeah! All right!
    Were [Pearl] jammin
    I wanna [Pearl] jam it wid you.
    Were [Pearl] jammin, [Pearl] jammin
    And I hope you like [Pearl] jammin too.

    Sep 30, 2006 - OAKA Sports Hall - Athens, Greece
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