Epilepsy Action & Purple Day: What Every Health Charity Can Learn About Awareness, Storytelling, and Media
Every 26th March, the world turns purple. Purple Day is the international epilepsy awareness day — a moment when charities, supporters, and people living with epilepsy come together to break stigma, share stories, and build the kind of public understanding that makes fundraising possible.
For this special episode of The Strategic Health Check, released on Purple Day itself, Jose Gaign sat down with Chantal Spittles, PR and Media Manager of Epilepsy Action — the UK's largest epilepsy charity — for a conversation that was, by any measure, one of the most honest and human episodes of the podcast to date.
What follows is a summary of the key lessons from that conversation, and why they matter for every small to mid-sized UK health charity trying to cut through the noise.
What Is Purple Day — and Why Does It Matter?
Purple Day was created in 2008 by nine-year-old Cassidy Megan, who wanted to reduce the isolation felt by people with epilepsy. Today it is observed in over 85 countries. For Epilepsy Action, it is one of the most important dates in the communications calendar — a moment when the entire world is, however briefly, paying attention to epilepsy.
But Purple Day is more than a hashtag. It is a proof of concept for something every health charity should be doing year-round: using awareness days as structured moments to tell stories, generate media coverage, and convert public attention into donor relationships.
As Chantal explained in the episode, the key is preparation. Purple Day does not succeed because Epilepsy Action posts something on Instagram on 26th March. It succeeds because the team has spent weeks identifying spokespeople, preparing media pitches, briefing journalists, and activating their supporter network. The day itself is the visible tip of an invisible iceberg.
What Everyone Should Know About Epilepsy
Epilepsy affects approximately 600,000 people in the UK — roughly 1 in 100. It is the world's most common serious neurological condition. Yet public understanding remains stubbornly low, and the stigma that surrounds it is real and damaging.
Chantal outlined three things she wishes everyone understood:
- Epilepsy is not one condition. There are over 40 different types of epilepsy, each with different triggers, presentations, and treatments. The tonic-clonic seizure most people picture is just one of many.
- Most people with epilepsy do not have seizures in public. The lived experience of epilepsy is often invisible — the anxiety, the medication side effects, the restrictions on driving and employment — and that invisibility makes advocacy harder.
- Epilepsy can affect anyone at any age. It is not a childhood condition. It is not a learning disability. It is a neurological condition that does not discriminate.
For health charities working in adjacent spaces — mental health, neurological conditions, rare diseases — the lesson is the same: never assume your audience knows what you know. Every piece of communications should start from a place of education, not assumption.
The Power of Personal Story: A Moment of Genuine Vulnerability
In a rare moment of personal openness, Jose spoke about his own experiences with epilepsy during this episode — a disclosure that was unplanned, unrehearsed, and prompted by Chantal's infectious passion for the cause.
This moment illustrates something that no communications strategy document can fully capture: the most powerful fundraising tool any charity has is a human being speaking honestly about their own experience.
Chantal's response — warm, informed, and deeply empathetic — was itself a demonstration of what good charity communications looks like in practice. She did not pivot to a donation ask. She listened. She validated. She connected.
For small health charities, the implication is clear: invest in training your staff and volunteers to have these conversations well. The ability to receive someone's story with grace and respond with genuine human warmth is a skill, and it is one that converts supporters into lifelong advocates.
How Epilepsy Action Uses Storytelling and Media Relations
Epilepsy Action's communications strategy is built on three pillars that any health charity can adapt:
1. A Living Story Bank
The charity maintains an active network of spokespeople — people living with epilepsy, family members, and healthcare professionals — who are willing to speak to media. These are not one-off contacts; they are relationships built over time, with proper briefing, support, and follow-up.
For small charities, the equivalent is a living story bank: a simple document or database of people connected to your cause who have given permission to share their story, with a brief summary of their experience and the best way to contact them. Building this takes time, but it pays dividends every time a journalist calls or an awareness day arrives.
2. Proactive Media Pitching
Chantal's team does not wait for journalists to come to them. They identify story angles in advance, research the right journalists and editors for each angle, and pitch proactively — often weeks before an awareness day.
The pitch itself is not a press release. It is a short, personalised email that answers the journalist's unspoken question: why should my readers care about this, right now? Timeliness, human interest, and a clear news hook are the three ingredients of a pitch that gets opened.
3. Authentic Social Content
On Purple Day, Epilepsy Action's social channels feature real people — not stock photography, not corporate graphics. Real faces, real stories, real moments. This is not accidental. It is the result of a deliberate content strategy that prioritises authenticity over polish.
For small charities with limited design budgets, this is actually good news: your most powerful content costs nothing to produce. A phone video of a beneficiary, a candid photograph from an event, a staff member speaking directly to camera — these consistently outperform professionally designed graphics in reach and engagement.
Awareness Days as a Strategic Tool
The episode's most practically useful section was Chantal's breakdown of how to use awareness days strategically — not just as a moment to post content, but as a structured opportunity to advance your charity's communications and fundraising goals.
Her framework, distilled:
| Phase | Timing | Actions |
|---|---|---|
| Preparation | 6–8 weeks before | Identify spokespeople, prepare media pitches, brief your board and staff |
| Activation | 2 weeks before | Send pitches to journalists, brief your supporter network, schedule social content |
| The Day | Awareness day itself | Publish content, respond to media enquiries, engage with supporter posts in real time |
| Follow-up | 1–2 weeks after | Thank spokespeople, capture results, identify what to do differently next year |
The key insight is that the awareness day is not the campaign — it is the deadline. Everything that makes the day successful happens in the weeks before it.
Three Lessons for Small and Mid-Sized Health Charities
Chantal closed the episode with a message that resonated deeply: small charities should not be intimidated by the scale of organisations like Epilepsy Action. The principles that make their communications work — authenticity, preparation, human story, and genuine relationships with journalists — are available to every charity, regardless of budget.
The three lessons Jose and Chantal agreed on:
- Your story is your strategy. No amount of paid advertising will outperform a genuine, well-told human story. Invest in finding and telling those stories.
- Awareness days are leverage points. Identify the two or three awareness days most relevant to your cause and treat them as major communications events, not afterthoughts.
- Media relationships are built, not bought. A journalist who trusts you as a reliable, credible source is worth more than any press release. Invest in those relationships before you need them.
Your Strategic Homework
Direct from the episode:
- Identify your top three awareness days. For each one, write a one-paragraph plan for how you will use it as a communications and fundraising moment this year. What story will you tell? Who will tell it? Which journalists will you pitch?
- Build your story bank. Does your charity have a bank of personal stories from beneficiaries or staff? If not, reach out to three people this week and ask if they would be willing to share their story. Start small — even three stories is a foundation.
Listen to the Full Episode
This article is drawn from S1 EP9 of The Strategic Health Check — Epilepsy Action: Purple Day — featuring Chantal Spittles, PR and Media Manager of Epilepsy Action. You can watch the full episode on YouTube or listen on the podcast page.
For more information about epilepsy and Epilepsy Action's work, visit epilepsy.org.uk.
Gaign Strategic Fundraising works with small to mid-sized UK health charities to build the revenue strategies and communications confidence they need to grow. Book a free Revenue Diagnostic call to find out what your charity is capable of.