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 £150 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.
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.
Future events
Jeans for Genes day
Mon 18 - Sun 24 September 2023
Jeans for Genes has invited rare diseases charities to help share their well-known brand and raise awareness together. It is a great way to bring a whole school or workplace together and raise money for Genetic Disorders UK and the BPA. The day invites people to leave suits and uniforms at home and wear jeans in return for a £1 donation.
Sign up for a free fundraising pack. Don’t forget to choose the BPA as your affiliated genetic disorders charity, so that we get 50% of any income raised.