Get inspired by Lana’s Purple For Porphyria experience
Student and BPA supporter Lana McGuire held a Purple For Porphyria Day at her school on Rare Disease Day in 2024. Read on to find how she did it and how you can follow in her footsteps to fundraise in your own community.
Lana (left) and Riya (right) at their Purple For Porphyria Day in Feb 2024
How did you get involved with the BPA?
I was inspired to volunteer and fundraise for the BPA after attending the first BPA Connect Alfresco event in 2022 where I met a fabulous group of children who were determined to have as much fun as possible despite the challenges of EPP. I set about organising a non-uniform fundraiser at my school on Rare Disease Day (29 February 2024) using the Purple For Porphyria campaign.
How did you go about organising the event?
I started by contacting my headteacher, explaining about the Alfresco 2024 Residential and how important I thought it was to support children with EPP to be able to participate in the activity weekend. My school were really supportive and the date was put in the diary for a non-uniform day.
To raise awareness beforehand and to explain what the fundraiser was for, I gave a presentation during assembly about porphyria and the challenges faced by people who have porphyria. I encouraged everyone to bring a £2 donation and wear purple if they could. As most of my friends didn’t have anything purple to wear, I decided to sell purple ribbons as another way to raise awareness and money. We bought 100 ribbons online, and in the week leading up to Rare Disease Day I visited individual tutor groups in my school to promote the campaign and sell ribbons, as well as answering any questions people had about porphyria. My parents also sold ribbons at work and we soon sold out!
How did it go on the day?
I’m still amazed at how successful the fundraiser was – the total raised was £607.12 – and I am really proud that I have helped to increase awareness about these rare diseases. Almost my entire school participated in the day and contributed generously. I was really nervous talking about porphyria to start with, especially to such big audiences, but each time I explained what it was, how to pronounce it (!) and how important it was for children with EPP to have this kind of opportunity, my confidence grew and I was really happy to hear people talking about porphyria. I am really grateful for all the support I had from my school, family and friends and I am very proud of everything we achieved together.
What advice do you have for anyone looking to host a Purple For Porphyria Day?
The Purple For Porphyria information on the BPA website was great and really helped me with my campaign. I hope this will help and inspire you to fundraise for the BPA and raise awareness for EPP, as the more people who know about porphyria the better!
