John Adams

Canadian PKU and Allied Disorders

Contact Information

John Adams
Toronto , Canada

Professional Information

President & CEO
Canadian PKU and Allied Disorders

Education

Bio

Wife died July, 2014 diagnosed post-mortem with Frontotemporal Degeneration type II with atypical motor neuron disease. Donated key organs and tissues to NIH Brain bank project on neurological disorders, whole exoneration sequencing underway and cell line established from fibroblasts.

Management consultant with special focus on rare disorders and newborn screening. Board Chair, Canadian Organization for Rare Disorders.

Has an adult son with PKU who is doing very well on first drug therapy after volunteering for a clinical trial.