Creating Treatments for Sanfilippo Syndrome
Parents of children suffering from chronic or terminal conditions, must turn their homes into clinics, filled with medications, care and medical equipment. Phoenix Nest is synonymous with that, the mythical Phoenix made her nest out of Frankincense, myrrh and spices, all known to have medicinal qualities. Like the Phoenix these parents rise up to meet the hard challenges of caring for and providing for their children’s special needs. Meanwhile keeping the faith that a curative-treatment will be created for them, so that someday they will grow strong enough to leave the proverbial nest and live full and happy lives.
– Jill Wood (Jonah’s mom)
Phoenix Nest was founded by an alliance of parents with children suffering from Sanfilippo syndrome type C. Our management team has a built-in sense of urgency and limitless determination to bring a treatment to the families affected by Sanfilippo syndrome to market. Phoenix Nest is the proud recipient of several Small Business Innovation Research grants from the National Institute of Health. Through funding from the NIH, we have been able to facilitate the research in academic labs and licensed these programs. With support from our Independent Scientific Advisory Board and Board of Directors we have thus far successfully met the challenges of pioneering treatments for these ultra-rare and untreatable diseases.