Rare Disease Report

Patient Advocate Turned Biotech Executive

FEBRUARY 09, 2013

Jill Wood founded the non-profit advocacy group Jonah’s Just Begun after her son was diagnosed Sanfilippo syndrome, a rare lysosomal storage disorder [also referred to as Mucopolysaccharidosis (MPS) IIIC]. In the few years that Jonah’s Just Begun has been in existence, Jill has enabled scientists to create an animal model for Sanfilippo syndrome and  begun preclinical studies with novel drugs. To make sure this venture can continue to the clinical level, Jill founded Phoenix Nest Inc to help obtain funding.

Jill recently talked to Rare Disease Report about this venture and the rationale for creating the company – and its name. Both are very interesting stories that other small, non-profit organizations can learn from.

For more information about her non-profit organization, visit www.johansjustbegun.org

For more information about her company, visit  http://phoenixnestbiotech.com/

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