«

»

Jun
11

Rare Occurrence Reception

Jill Wood from Jonah’s Just Begun has a cocktail event planned in New York next week to raise money to fund a postdoc in one of the labs doing Sanfilippo syndrome research. This is obviously something I am very close too.  It just shows the willingness and generosity of those involved to help out (Jonny Lee Miller and Kristine Johnson are co-hosts).

Jill also sent along a short video she and several other Sanfilippo parents made (with the help of Jill’s husband Jeremy!) and it has interviews with two scientists, Brian Bigger and Alexey Pshezhetsky as well as shows some of these beautiful children. Their future is very much in our hands to find treatments.

Please pass this along to anyone thats willing to support this cause.

1 comment

No ping yet

  1. sean says:

    Here is a photo from the event which was fantastic! https://twitter.com/JJB4CURE/status/481831563097681920/photo/1

Leave a Reply

Your email address will not be published.

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <s> <strike> <strong>