PORPHYRIA - Key Persons
Job Titles:
- Helpline Assistant / Trustee
Alan has AIP and suffered a very severe attack in his younger years. His daughter has also been affected by severe attacks. Alan has been involved with the charity for many years, doing a stint as Treasurer in 2008-2010. As well as being a trustee, Alan also assists in the administration of the email helpline.
Job Titles:
- Treasurer
- Trustee
- BPA Treasurer
Anne has been involved with the BPA since just after it's inception in 1999. She came across an early invitation to one of the first support group meetings while searching for information on the porphyrias, as her daughter was very ill with acute porphyria.
Anne is the current BPA Treasurer and has fulfilled this role since 2010, after doing an earlier stint of the same role a few years before. Anne ensures that the charity complies with all its accounting commitments, including annual returns and reports for the Charities Commission and HMRC etc. Anne also maintains the membership database and keeps the committee abreast of the latest changes in the finance and charity fields.
Job Titles:
- EPP Ambassador / IT Advisor
- Key Member of an Epnet
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.
My mum and I were diagnosed with EPP in 1972 - we were the first known cases in East Anglia. At that time, such was the limited understanding of the…...
Job Titles:
- Administrative Assistant
- BPA As an Administrative Assistant
Georgia joined the BPA as an administrative assistant in 2023. She does not have porphyria but lives with energy-limiting chronic illness and is passionate about providing high-quality health information to all those living with long term conditions. She has a background in health information, digital communications, and project management, as well as copywriting and translation. She enjoys the wide variety of tasks she is able to contribute to at the BPA, including social media content creation, fundraising, and designing promotional materials.
Job Titles:
- Chairman of the Board of Trustees
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. He has the gene for VP, but has not been badly affected.
Karen was diagnosed with variegate porphyria (VP) in 1982 (aged 26). It is assumed she inherited it from her father, as it is thought he probably suffered with many undiagnosed symptoms of VP. When Karen was young, she suffered several acute attacks and many episodes of blistering to her hands and feet. However, once diagnosed made lifestyle changes to reduce the incidence of symptoms and has since lived an almost symptomless life.
In early July 1998, an article in the Daily Mail by Christopher Hudson portrayed porphyria in a poor light and so Karen responded, with her letter and accompanying photo being printed on 15th July. In the letter, Karen invited other people with porphyria to get in touch, in the hope of forming a fundraising association.
At the time, Karen's specialist in London (Professor Tim Peters) said that he could help by inviting some other patients to an informal meeting. He also invited Professor George Elder, who was working with porphyria patients in Cardiff, and CLIMB, a charity supporting children with metabolic diseases, who he thought would be able to provide advice.
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.
Job Titles:
- Trustee in 2005 After Being Involved
Liz became a trustee in 2005 after being involved with the charity for a number of years, then took up her current role in 2010. She also works as a paid administrator, in addition to her voluntary hours.
Severely affected by acute porphyria since her late teens, Liz has developed an in depth understanding of all types of porphyria and the needs of those living with them through…...
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
Sophia joined the BPA in 2017 after self-diagnosing with EPP through the BPA website. Sophia helps run the blog page and social media accounts. She lives and works in London. In her spare time, she takes part in amateur dramatics and improv. Sophia has a zest for travelling after visiting South East Asia this summer despite her condition. She's passionate about travelling with EPP and is a keen advocate for discussing EPP-related mental health issues.
Sue first became aware of the BPA in her late teens, when her sister became ill. Even though she wasn't actively involved in the charity's workings at this stage, she would help…...
Teresa Baker have been involved with the BPA for around five years. Teresa was diagnosed with acute intermittent porphyria in about 2012 and since then has been unable to work due to recurrent flares of pain and acute attacks.
Teresa has home treatments as well as sometimes having to be admitted into hospital. Chris, a PSV driver, is currently being trained so that he can do infusions for Teresa at home. Chris and Teresa have lived in Milton Keynes for around 24 years, but originally both came from Birmingham. They became members of the committee so that they could help raise awareness of the condition for all, especially the healthcare profession.