Join the campaign to fundraise for a Residential Activity Weekend developed primarily for children and young people affected by erythropoietic protoporphyria (EPP).

EPP is a rare genetic condition that causes excruciating pain and skin damage on exposure to sunlight. Symptoms make daily activities, including education, sport and personal relationships a huge challenge – impacting negatively on physical health, relationships and, in the long-term, financial stability and psychological and emotional wellbeing.

I wasn't diagnosed until I was 24, this was after many years of fighting to get doctors to believe I was having allergic reactions with the sunlight, they thought I was self harming or making it up ( this was usally the case when I just had the sever pain prior to swelling and blistering). Since being diagnosed I offer full support to fellow sufferers, parents and also medical professionals, I also volunteer for the British Porphyria Association.

I have been involved with the BPA for several years and I have recently become a trustee.

In October 2024, we are having an outdoor activity event designed for young people with erythropoietic protoporphyria (EPP).

On 17th May 2024, I am 40 years young and I would like to raise £180 which could cover complete costs for a young person with EPP to attend the residential weekend (accommodation, catering and two day's activities).

Story

Join our campaign to fundraise for porphyria patients. In addition to our usual routes of support, our focus for this year is a Residential Activity Weekend developed primarily for children and young people affected by erythropoietic protoporphyria (EPP).

What is EPP?

EPP is a rare genetic condition that causes excruciating pain and skin damage on exposure to sunlight. Symptoms make daily activities, including education, sport and personal relationships a huge challenge – impacting negatively on physical health, relationships and, in the long-term, financial stability and psychological and emotional wellbeing.

How will the residential help?

Our participants will be encouraged to get involved in outdoor activities in a safe way. The residential will provide chances to take part in adventurous activities while taking advantage of evenings, shade and prevailing weather conditions to maximise adventure, whilst minimising risks.

Empowering our young community to TAKE CONTROL, to learn skills and strategies to UNDERSTAND their limits and to CONNECT with others, has been shown to raise their confidence in building relationships and in expressing what they need to be safe and get the best out of social situations. This can positively impact their ability to manage their condition in the future.

Her teacher said how much difference the day has made to her confidence!

I don't feel alone any more!

The activity weekend will also provide the opportunity to experience the mental and physical benefits of being outdoors in nature.

What will the fundraising enable?

A successful campaign will enable us to support and empower porphyria patients. The following amounts show how funds raised could be spent.

£6 Covers the annual cost of the BPA newsletter (two issues)

for one person

£15 Enables an initial consultation to assess patient/family needs

£20 Enables patient support for a week via our email and telephone

helplines

£50 Could pay for patient travel to a clinic appointment or BPA event

£50 Could pay for a half-day adventurous/challenge activities at the

activity weekend

£100 Could be used to pay for family accommodation for the residential

weekend

£180 Could cover complete costs for a young person with EPP to attend

the residential weekend (accommodation, catering and two day's

activities)

Thank you for helping to support our campaign

#TeamBPA