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

asax3k

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).

If you're able to help, please donate here: https://www.crowdrise.com/o/en/campaign/team-eb-nyc-half-2018/amitsaxena1

Thanks!!

For more info on Makenzie:

https://www.facebook.com/makenzie.cadmus
https://www.gofundme.com/25qu8us

https://link.endpain.com/XAnw/dcIB8yRekK

https://www.youtube.com/watch?v=UCVHSS13piU 

helplessdancer

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

BLACK35

helplessdancer said:

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

Pap

https://www.youtube.com/watch?v=W80xictJA3M