Help us make 2024 a year to be proud of

Black and green text on a white background reads: BPA Connect Alfresco. Residential Activity Weekend. 12-13 Oct 2024. Thorpe Woodlands, Thetford, Norfolk. A black and white illustration that looks like fireworks is located above the text. A line of green fir trees runs across the bottom of the image

This year, the BPA is concentrating its fundraising efforts on one clear goal: BPA Connect Alfresco 2024!

In other words, we are running a fundraising campaign that will enable us to take a group of young people with EPP on a residential activity weekend, so they can safely experience the mental and physical benefits of the great outdoors – and we need your help.

Donate now

What is EPP?

Erythropoietic protoporphyria (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 BPA Connect Alfresco help?

By creating a sun-safe outdoor environment, the activity weekend will empower young people with EPP to understand their condition, connect with others, build the confidence to take control, and share their story.

How do we know? Just ask our Alfresco adventurers from 2022!

“[The Alfresco event] was AMAZING. I still keep up with my friends that I made whilst I was there, and the charity treasure hunt was also such a fun and entertaining experience.” – Alfresco 2022 volunteer

How you can help

There are so many different ways to fundraise for the BPA and contribute to the Alfresco project.

A fun option to get your whole community involved could be to organise a Wear Purple for Porphyria Day at your school, workplace, or other community space. (Purple is the internationally recognised colour of porphyria, as the condition is named from the ancient Greek word porphyrus, meaning purple.)

It couldn’t be easier to get started: just pick a day (e.g. Rare Disease Day or Global Porphyria Day), ask everyone to wear an item of purple clothing and bring in a £1 donation on that day, then send the funds raised over to us! We’ve even created handy how-to guides and promotional posters on our website to help you put together the event.

On a purple background, text reads "Wear Purple for Porphyria on 29 Feb 2024. Help us raise vital funds for families affected by rare disease. £1 donation." There are illustrations of purple jumpers, trousers and clothes dotted around the text. The BPA logo is in the bottom right corner. The Rare Disease Day logo is in the top left corner.
A photo collage of different people competing in different sporting events dressed in BPA sports jerseys

Maybe you’re an athlete who has been looking for your next challenge? If so, why not don the BPA jersey with pride and take up one of the several charity places we have available in this year’s Brighton Marathon (7 April) and Great North Run (8 September)?

Or you could set your own challenge on a sponsored bike ride or walk, like our star fundraisers the Carlin family (pictured below) who recently raised over £4500 for the cause!

Find out more about signing up for a sporting challenge on our sporting fundraising events page.

“The BPA will help you as much as you help them, giving you some amazing opportunities & memories that you will cherish for years to come.

The best part is that you not only feel like you are making a difference, but you are making a difference!” – BPA VOLUNTEER

If sport isn’t your thing, or in-person events aren’t accessible for you, why not check out our Virtual fundraising ideas page? Get stuck into a sponsored gaming stream-athon or virtual pub quiz and raise vital funds and awareness for porphyria from the comfort of your own home!

Close up on hands using a video game controller, against a neon purple, yellow, blue and pink background.
A red velvet cake with three tiers and cream frosting sits on a cake stand, next to a vase containing sticks with red berries on them.

An even simpler and low-pressure way to raise funds could be to ask your friends and family to donate to the Alfresco project in honour of your birthday, wedding, retirement party, or other important milestone coming up this year. Visit our Celebrations and special occasions page to find out more.

Still need inspiration?

Check out our simple A-Z of fundraising ideas and take your pick, from a sponsored abseil to a Zumbathon, and help us make 2024 a year to be proud of.

TIMING IS EVERYTHING

You can take part in fundraising activities any time of the year, but there are two key attention-grabbing events coming up that will be excellent opportunities to raise awareness:

  • Porphyria Awareness Week – Anytime between 11-18 May 2024
  • Global Porphyria Day – Saturday 18 May 2024

LET US KNOW YOUR PLANS

Don’t forget to register your event so that we can ensure you’re getting all the support you need for your fundraising activities – and so we can give you a shout-out on social media!

Register now

Can’t organise an event this time? Donate instead!

If you’re not able to organise an event, you can always make a donation to the campaign on our JustGiving page in honour of Rare Disease Day, Porphyria Awareness Week, or Global Porphyria Day (or any other time of year!).

You can sign up to make a regular monthly donation or opt for a one-off payment – every little helps achieve our goal of supporting people affected by porphyria and their families.

Find everything you need to get involved in fundraising for the BPA at porphyria.org.uk/fundraising.