Fundraising

Do you feel inspired to take part in an active challenge to raise valuable funds to help support people with porphyria?

Organising your own personal challenge or sporting event is worth the effort and rewards. From epic solo hikes to group cycling events, football tournaments and sports days, there’s something for every taste and ability. You could take on a walk, run, cycle or triathlon. Or you might have something more daring in mind – maybe a sky dive or abseil.

We coordinate a number of official places each year in some of the most popular sporting events. Register your interest today on helpline@porphyria.org.uk or 0300 30 200 30.

If you are doing an athletic or endurance event (e.g. marathon, triathlon or cycling event) and planning to raise more than £300 for the BPA we will provide you with a professional grade sports jersey/running vest. It’s a great way to increase awareness, just let us know the size you require (you may like to ask for a larger size as they come up as a small/slim fit).

If an active/endurance event isn’t your style, you might have other plans to raise funds. Please see our Other fundraising ideas page for more hints and tips on raising funds.

Photo montage of people fundraising for the BPA at different sporting events, all wearing BPA bibs and smiling at the camera.

Pre-race CHECKLIST

  1. Choose a sporting event and decide your route, date, and if you will be doing it in a group or solo.
  2. Register your event to let us know what you’ve got planned.
  3. Create your online fundraising page and get training!
  4. Promote your fundraising activity online using our social media toolkit containing template posts, images and videos.
  5. Ready, set, go!

ORAN'S STORY - SPONSORED STAIRWAY TO HEAVEN WALK

Meet Oran, our EPP fundraiser extraordinaire, who climbed the Cuilcagh Mountains in Northern Ireland to raise money for the BPA

MissionOran, a teenage boy, stands in between his parents. Oran is wearing sun protective gear (hat, gloves, scarf) and they are all wearing purple t-shirts which read "NICE: Make Scenesse available". They are standing in front of a scenic mountain view.
The Stairway to Heaven walk, to raise £1,000 for the BPA.
Location
County Fermanagh, the Cuilcagh Mountains
Date
Sunday 20 August 2023 (chosen as it usually rains in
August in Northern Ireland!)
Challenge
A trail up through the Cuilcagh Mountains, with a height
of 666 metres (2,185 ft), which involves completing the 9
miles (15km) round trip before the warmest part of the day
Team
Oran, who has EPP, and 23 of his family members and friends
Equipment
Sun cream, hats, sun snood and protective gloves, plus
purple porphyria t-shirts

 

Oran’s mum, Breanda Carlin, gave us the rundown of how the challenge went on the day:

“On the weeks leading up to the walk Oran was anxious and was constantly checking the weather on his phone (as he does with school trips and football matches). On the morning of the walk, Oran was relieved to see the sky was very overcast and he felt he was able to join his friends on the walk. Even with the morning weather being in Oran’s favour, he always has to have his sun cream, hat, sun-protective snood and UVA protective gloves with him – as he is always aware the sun could come out at any point (thankfully this did not happen until we were arriving back at the coach, to go home). Luckily, Oran was well covered and did not have a reaction! Instead, he had a great day out with his family and friends and did not have to suffer for it later. We all made it to the top and the view was stunning!”

Thanks to their incredible efforts, Oran and his friends and family raised a phenomenal £4,750 for the BPA – thank you, Team Oran!

Photo collage of Oran and his family and friends climbing the Cuilcagh Mountains. Various photos of a group of 23 people walking, including adults and teenagers, all are wearing purple Porphyria t-shirts.

KAY'S STORY - GREAT NORTH RUN 2022

READ ABOUT KAY'S INSPIRING AND REWARDING FUNDRAISING EXPERIENCE

Some months back I decided to set myself a personal challenge and signed up for the Great North Run. I decided to fundraise for the BPA as they have been a great sense of support to myself and my family for many years now. I set up a JustGiving page with frequent posts regarding my training and my progress, I’m pleased and I’m shocked to say I’ve raised £970 for the BPA.

In April, I started my training. Initially I was running 5K twice a week, but I gradually built this up and my distance increased along with my stamina. I was soon enjoying and looking forward to going out for my training runs. The week before the run I had to take advice again from my friend on how to carb up and how to hydrate myself sufficiently. I don’t think I’ve ever eaten so many carbs in such a short space of time before!

The morning of the event I, along with hundreds of other people, got on the train from Darlington up to Newcastle. All around me were runners and spectators, the whole atmosphere and friendliness from everyone was infectious. People were so happy and so excited and so keen to be together to embark on such a huge challenge and to complete the half marathon. It took around 2 hours to just to get to the start line – I think I did more than 10,000 steps before I even started the run!

The atmosphere throughout the whole half marathon route was fantastic. People were on the streets clapping and cheering, local bands were playing their music along the route, while the big charities were there supporting their runners. I must say I enjoyed the run immensely, there was at no point any thoughts about whether I would manage to finish the run in a certain time – it was simply to run every single step. I not only achieved my aim, but I finished the half marathon in 2 hours and 19 minutes – as I crossed the finish line I felt so proud of myself!

If someone had said to me in 2000 that I would be running a half marathon I think I would have just laughed because at that time I was having an acute porphyria attack – I have variegate porphyria (VP). After the attack I was in the hospital for six weeks, I was unable to walk when I left the hospital and I was having haem arginate four times every week. Unfortunately, this was how my life panned out over the following 7 to 10 years, my porphyria journey was very severe but with the help and support of my family, friends and the experts at Kings College hospital, I have been able to return to running and achieve this huge personal challenge! Having completed a half marathon, I now have itchy feet and hope to continue my running. I think I will set my next challenge as a full marathon. Who knows, I may well be in the London Marathon in 2023 or 2024.