Light the UK this May for GBS|CIDP Awareness Month
GBS|CIDP Awareness Month is just around the corner, with the month kicking off May 1st 2025.
As we’re sure you’re aware, GBS and CIDP are known as rare conditions in the UK with around 1,300 people impacted here each year.
This doesn’t seem like a lot when you factor in a population of approximately 68 million. In fact it works out at about 1-2 per 100,000 people. Now it’s hard to visualise 100,000 people, so to get a better impression, picture Glastonbury.
The main Pyramid Stage at Glastonbury has a capacity of roughly 120,000 people. So when you’re watching a sold out headliner show, only two people out of that entire crowd will statistically have experienced GBS or CIDP. Now image yourself there at ground level trying to find your friends somewhere in that crowd.
It’s needle in haystack stuff. It’s lonely stuff.
Our 1,300 people are spread across the UK from up in the Highlands right the way down to the English channel. Each of those individuals has a unique story and perspective about their GBS/CIDP experience, but they may never have had the opportunity to tell it in person to someone else.
While we do see many of these people in our Zoom calls, we’re painfully aware that GAIN has been hard to find, and know that there are people out there who have never interacted with us.
We’re trying to send a message of solidarity to them by lighting buildings in blue across the UK in May, creating a beacon of hope if you will. By getting involved, you’ll be sending a message to someone else in your community that they aren’t on their own, that there’s someone else in their area that has had a similar potentially life changing diagnosis.
We’ve created a short letter you can send to your local council (or building/statue/prominent location owners), or you can write your own. Click below, copy and paste the text, and change the [] sections to fit your personal details.
Good luck, and lets see the UK in full blue this May.
Customisable Letter
Dear [Recipient’s Name],
I hope this message finds you well. I am writing to you in support of an awareness campaign led by the UK charity GAIN (Guillain-Barré and Associated Inflammatory Neuropathies), in recognition of Guillain-Barré Syndrome (GBS) and Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) during GBS|CIDP May Awareness Month.
I am reaching out to ask if [Building Name] can be lit in blue at any time during the month of May to help raise awareness of these rare neurological conditions.
GBS and CIDP, though rare, can be life-changing for those affected. Many of those impacted have never met someone with the same condition, so lighting the building in blue would send a message of solidarity to those living with these conditions in our local community.
This is part of a larger global effort, with similar campaigns happening in the USA. By lighting up a building in blue, we would not only be raising awareness here in [area], but amplyifing a global voice.
Personally, [GAIN/this cause] is important to me because [personal reason about why you support GAIN or how this cause impacts you]. I would be deeply grateful if [Building Name] could be illuminated in blue to help shine a light on this cause and make a real difference in raising awareness for GBS and CIDP.
Thank you for your time and consideration of this request. If you have any more questions, please feel free to ask me or reach out to GAIN themselves at office@gaincharity.org.uk.
Yours sincerely,
[Your Name]