Team

Antony became a committee member following becoming increasingly active in the search for effective treatments and means of preventing outbreaks of EPP. With a lifelong passion for sport and adventure Antony has battled the effects of EPP whilst pursuing a love for adventure sports such as climbing, mountaineering, skiing and cycling. Despite having suffered with the symptoms of EPP since early childhood, Antony was not diagnosed until the age of 32. Far from being a dream shattering experience the diagnosis finally provided a set of known facts and known scientific facts that provided an understanding of what he was up against. This has allowed Antony to find strategies that help him spend as much time as possible in the outdoors before the onset and pain of EPP become totally debilitating. It is probably worth qualifying that ‘as much time as possible’ can be well under an hour!. Never the less, by using the right clothing, and having a keen eye for the weather and UV patterns, along with being prepared to put up with a degree of pain in pursuit of his passions Antony continues to find ways of enjoying time in the mountains.

Antony’s aim as a BPA committee member is to develop a deeper understanding of EPP, identify strategies for mitigating the effects of EPP. Antony is committed to engaging with stakeholders in order to secure the approval for Clinuvel’s SCENESSE® which appears to be the single most effective treatment in mitigating the impact of EPP. Aware of the psychological impact of EPP and other porphyrias, Antony is also pursuing lines to ensure those diagnosed with EPP receive guidance that will support them through the psychological as well as physical challenges that pophyrias bring.

Antony is also a key member of an Epnet (European Porphyria Network) working group.

Richard Bennett has been a committee member for three years. He is not a porphyria sufferer, but became aware of the condition when he joined the pharmaceutical company, Orphan Europe. The company provides haem arginate, the only approved treatment for acute porphyria. Although he had 35 years’ experience in the pharmaceutical industry, he had never heard of porphyria until that point. Contact with the BPA through attending the bi-yearly conferences led to an invitation to attend a committee meeting. Recognising the dedication and enthusiastic endeavour of the small team trying to increase the awareness of porphyria, educate clinicians and support sufferers and families, it was not difficult for Richard to offer his support.

Kirstine has been involved with the BPA, alongside John Chamberlayne, for around 15 years. They both came to a BPA meeting after their daughter had suffered an attack of VP. Taking on the role of Minutes Secretary for many years, Kirstine is now involved with proofreading and checking documents and attending meetings.