Parent advocate becomes biotech founder

Jill Wood was living a normal Brooklyn life, working in the fashion industry... until her 2-year old son Jonah was diagnosed with Sanfilippo Syndrome (type C).  She then dropped everything and started a biotech (Phoenix Nest) to help solve Sanfilippo Syndrome type C, in the hopes of one day saving lives - including her son's. 

Jill Wood was the name that kept popping up when I started talking to organizations and foundations shortly after my son Connor was diagnosed with Sanfilippo Syndrome (type C) back in 2019.  Not only did Jill live relatively close by (she's in Brooklyn, I'm in suburban Philly), but she also happened to have a son with the exact same Sanfilippo 'type' (C), and therefore - in theory - we have kids seeking that exact same cure.  I met Jill one day for coffee in Brooklyn - my first time meeting a fellow Sanfilippo parent in the flesh - and I ended up staying in Brooklyn the next two days to learn from Jill and begin the process of navigating my own way into this strange new Sanfilippo world that I was thrust into following Connor's diagnosis in early 2019.   

Jill is an inspirational trailblazer in the Sanfilippo world, having dropped her career in fashion 13 years ago to spring into action in the hopes of one day discovering a cure for her son Jonah.  In the process, Jill founded Phoenix Nest, a bespoke biotech focused on treating the ultra-rare disease Sanfilippo syndrome.  
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To learn more about Phoenix Nest, click here: https://www.phoenixnestbiotech.com/

Here's a 2.5-minute summary compilation of our conversation with Jill (back in January 2023)

​We asked the neurologist, 'Is this a death sentence?'. She replied, 'It doesn't have to be'. And that was all that I needed to hear"

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Click here for the full (22 minute) conversation: