Around 15 years ago, John and his wife, Kirstine, attended some of the early BPA meetings after their daughter suffered from a severe attack of variegate porphyria, which was eventually recognised as porphyria by a dermatologist. Fairly soon, John become involved by helping out with creating a website. Later, some of the established members wanted to pull back from duties and John took the role of Chair. In 2024, John stepped down as Chair and now serves as a general trustee. He has the gene for VP, but has not been badly affected.