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My Final Year Project: How to Launch a Non-Profit Organisation

Below is my Final Year Project for my BA Communications and Media degree at the University of Gloucestershire. This is a full scale investigation and campaign plan revolving around the blood condition antiphospholipid syndrome. Please enjoy!

Research Project surrounding the awareness of antiphospholipid syndrome amongst both healthcare professionals and the general public, and a campaign plan for a new non-profit organisation concerning how awareness can be raised.

Contents:

An introduction to the project - aims and methods.
Antiphospholipid syndrome: What is it and why are we not talking about it?

2.1. Survey Results

2.2. My Motivation

2.3. Lack of Healthcare Awareness and an Interview with a Nurse

2.4. Findings from an Interview with a Patient with Antiphospholipid syndrome

2.5. Market Research

3. Campaign Plan Introduction

3.1. Month 1: Foundation and Soft Launch

3.2. Month 2: Awareness Activation

3.3. Month 3: Campaign Collaboration and Real Talk

3.4. Month 4: Community and Education

3.5. Month 5: Publicity and Conveying Messages

3.6. Month 6: Awareness Day and Big Media Push

3.7. Costs and Budgeting

3.8. After the Campaign and Concluding Thoughts

4. Example Content

An introduction to the project - aims and methods.

In this project, research will be conducted to deduce how much knowledge the average person has concerning antiphospholipid syndrome, as well as how commonly known this autoimmune disorder is amongst those within the NHS.

From this information, conclusions will then be drawn and put into effect in the form of a campaign plan for a charity that focuses on spreading awareness surrounding antiphospholipid syndrome. This will include content ideas and examples, timeframes, and comparisons to other campaigns of a similar nature. This campaign is set on raising awareness of antiphospholipid syndrome for three reasons:

So that the public are more aware of the condition and are better educated about it. This would be important for employers, coworkers or even friends of people with antiphospholipid syndrome, so that they are able to identify any symptoms or potential risks towards those affected by it.
To ensure that all healthcare workers are suitably informed and clued up on all things surrounding antiphospholipid syndrome. Due to the disorder's rarity, it is not uncommon for nurses and GPs that do not specialise in blood work to not have heard of it. However, given the number of complications that can arise from Antiphospholipid syndrome, I believe it necessary to ensure that a basic level of knowledge should be had throughout all healthcare professionals.
Most importantly, to ensure that people - professional or not - are aware of how to diagnose antiphospholipid syndrome through its symptoms and side effects. This disorder carries an extremely long average time for diagnosis, meaning that many suffer the full effect of antiphospholipid syndrome without medical alleviation for sustained periods of time. Deeper understanding of diagnosis would help to stop the amount of suffering endured by these people.

Throughout this project, I will use primary research in the form of poll results, feedback from questions and interview answers and conversations. I will also use secondary research to compare my charity’s campaign plan to others, as well as sourcing scientific evidence to help me better understand both the condition itself and the reasons behind the lack of knowledge surrounding antiphospholipid syndrome. This will include talking with both a member of the NHS and a sufferer of APS to gain valuable insight into their opinions concerning what could be done to further APS support, as well as a look into the current leading APS support forum to conclude what could be done better to help both patients and non-patients learn about antiphospholipid syndrome.

2. Antiphospholipid syndrome: What is it and why are we not talking about it?

Antiphospholipid syndrome, more commonly referred to as APS or Hughes syndrome, is an autoimmune disorder where the immune system mistakenly produces antibodies against phospholipids, a type of fat in cell membranes. This leads to increased clotting, which can cause deep vein thrombosis, stroke, and pregnancy complications like miscarriages. APS is associated with other autoimmune conditions like lupus but can also occur independently. Symptoms vary but may include recurrent blood clots, skin rashes, and neurological issues. Treatment typically involves blood thinners to reduce clotting risk, as the condition causes thicker blood - hence the increased likelihood of blood clots amongst other complications. APS can occur both on its own (primary antiphospholipid syndrome) or as a complication of other autoimmune disorders (secondary antiphospholipid syndrome).

The disorder is not common; a study posted to the American College of Rheumatology website in April 2019 states that APS affects 50 in 100000 people on average (Various Authors, 2019). This means that it can be classed as a rare disorder by organisations such as WHO and the NHS. Whilst this sounds uncommon, another way to measure the impact of APS is the rule of six. In under fifties, one in six strokes, miscarriages, DVTs and heart attacks are caused by APS. If 20% of these major complications are caused by APS, then why is it such an unspoken about condition?

2.1. Survey Results

I recently conducted a survey on my public Instagram page and ascertained some key information regarding people’s awareness and recognition of APS, as well as how they best thought it possible to further the reach of information regarding it. The results were both concerning and informative, with a multitude of people being both uninformed and unaware of both APS’s existence and what to look out for when diagnosing it. Here are the results from my survey, regarding knowledge of APS:

84.4% of people had not heard of antiphospholipid syndrome before
The 15.6% that had heard of APS all stated that they had only heard of the disorder through either friends (or me)
93.8% of people who answered were not aware of the health risks and dangers that are associated with APS
100% of people answered ‘no’ when asked if they knew how to spot the signs and symptoms of APS
Only 15.6% of people were unaware of other blood disorders, such as lupus, anaemia and blood clots. 50% were confident that they had heard of them all, and 34.4% answered that they were familiar with some but not all
100% of people had never seen any online OR physical information regarding APS and/or it’s treatment

Here are the results of my survey, regarding methods in which people believe they could be best communicated information about a charity concerning a medical disorder

When asked what form of content would best attract their attention to an organisation such as the one I intend to market, 54.5% of people said they would want to see some form of online content, 36.4% said a stunt of some kind, and 9.1% said a form of physical information
58.1% of people said that they find out information about medical conditions that do not affect them through social media outlets. 19.3% said they heard word of mouth, 12.9% use the NHS website, and 9.7% see it on the television
“Social media” and “short form content” were written in the answers of 70% of people when asked what they felt the best way of educating people about APS would be, whilst 16.7% mentioned a tailored website or Google, and 13.3% said to use some form of physical content like posters or leaflets

2.2. My Motivation

The lack of knowledge surrounding antiphospholipid syndrome is reflected in this survey, and I find it alarming that a disorder that is so frequently the cause of such serious conditions as heart attacks and strokes is as shrouded in mystery as it is. I was diagnosed with APS when I was 16, and as a teenage male, it was a hugely uncommon diagnosis. Antiphospholipid syndrome is most diagnosed between the ages of 20 and 50 and affects 3 to 5 times as many women as men (NHS Wales, 2025). Since my diagnosis, I have always felt that people across the world should be more aware of APS, as the effects that it can have on the body are serious and, if not treated correctly, potentially life-threatening.

2.3 Lack of Healthcare Awareness and an Interview with a Nurse

There is a severe lack of awareness in the diagnosis of antiphospholipid syndrome, especially within the healthcare industry amongst professionals

On average it takes three years for a patient to receive an APS diagnosis, with some consulting up to 19 specialists before being correctly diagnosed (APS Support UK, 2025)
Only 2% of APS patients are diagnosed by their GP, despite GPs being the first point of contact much of the time (APS Support UK, 2025)
A recent survey revealed that 37% of GPs had no knowledge of APS, and 58% of patients felt their GP lacked confidence in treating the condition (APS Support UK, 2025)
APS is not included in standard GP training curricula (Hansard - UK Parliament, 2015)

To get a better understanding of how APS is taught to members of the NHS, as well as gaining an inside perspective on how learning could be implemented, I met with Ellie Hansell, a trainee nurse working in a GP surgery in Norwich, England. Below are some questions that I asked her, along with the most helpful information that I gathered from her answers.

In your time in nursing training, has anyone ever mentioned antiphospholipid syndrome to you?

“No, not in my training. I’ve never heard of anything to do with it or even about it until now. I think it’s crazy that such an impactful autoimmune disorder can exist, yet it has never been mentioned to me or any of the other trainees.”

Have you ever treated any cases of antiphospholipid syndrome at all?

“None of my patients that I’ve looked after have ever had it, I've not ever come across it, I’ve not even heard of any of my assessors or mentors looking after a patient that has had it. It just never comes up.”

What would you say is the best way to get not just NHS workers but healthcare professionals in general to recognise the symptoms of APS?

“Campaigns and raising general awareness about it would be the best way, I think. Providing more training, no matter what their role as a healthcare professional is. I think that all NHS workers should be made aware of it and that it should be part of the training standard as of now.”

How would you respond to a free course on how to spot and diagnose APS? Would people respond well to that?

“Yes, definitely. Especially if it is a free course, people would not only respond well but also actively take part. I think that people will also relish the opportunity to learn more about it and to expand their knowledge base even more. I might be speaking for myself, but healthcare professionals enjoy learning about new and abstract diseases and disorders that we’ve never come across before - and this is no different.”

How familiar are you with other blood complications such as lupus and anaemia?

“Anaemia I come across a lot in training, especially in placement. I’m taught about them both a lot - they’re regularly discussed in training. Lupus is especially talked about a lot, even though I am yet to see a case of it in a patient.”

Do you think people should be better educated about the complications and to keep their eyes open for the signs of APS?

“100%, definitely. Again, it’s the signs and symptoms, what could happen and the risks of it that are so important to spread information about. As there is currently little to no awareness, there needs to be more. It should be the same level as every other related condition, lupus and anaemia having so much more awareness shouldn’t be the case at all.”

2.4. Findings from an interview with a patient with antiphospholipid syndrome

I spoke with Polly Wailoo, a student who suffers from antiphospholipid syndrome. I believe that speaking with Polly is vital, as it gives me the perspective of a patient of APS whilst writing my campaign plan. Polly’s story can also be used to create content for my organisation’s website, such as a feature based around our interview.

Polly Wailoo, who has lived with antiphospholipid syndrome for over 20 years, gave me her views as to why this condition needs greater public and clinical awareness. Diagnosed at just 10 years old, Polly’s journey began with years of unexplained symptoms - including chronic fatigue, migraines, and eventually a blood clot at age 9. It wasn’t until after her clot that doctors tested her for APS. She told me how she knows that it is rare for a child to be diagnosed, but also how unacceptable it is that repeated symptoms were dismissed as stress or bad luck. She spoke about how this reflects a systemic issue in the UK, where delays in diagnosis remain both common and damaging.

Polly explained that APS is often misunderstood as a condition that only causes blood clots, when in fact it causes issues throughout the whole body - affecting organs, heart valves, and more. Despite being on blood-thinning treatment, she has experienced multiple clots and long-term complications, including heart valve damage. “APS isn’t just one clot and you’re done,” she said. “It’s lifelong management.”

One of the major failings Polly identified is the lack of adequate information given to patients. At diagnosis, she was simply handed a leaflet and told she’d be on warfarin for life. Critical aspects - such as the disease’s impact on fertility, emotional wellbeing, and fatigue - were never discussed. Outside of specialist centres, she said, many patients are “left to navigate everything themselves,” which she labelled both isolating and unacceptable.

Polly identified three core areas where systemic care is failing:

Diagnosis Delays – APS still goes unrecognised by many GPs and specialists, with average diagnosis delays of three years.
Lack of Access to Specialists – Outside London and a few major cities, specialist clinics are virtually non-existent.
Poor Ongoing Management – Current care is “tick-box” and focused only on clots, rather than the holistic, multi-disciplinary approach patients truly need.

She acknowledged some improvement in awareness amongst haematologists and rheumatologists but noted that there’s still no national guidance for GPs, meaning care is inconsistent and postcode dependent.

If she could implement one change, Polly said that she would establish a National APS Service - offering coordinated diagnosis, cardiology, neurology, maternity and mental health support. This would be accompanied by a public awareness campaign and medical training to help aid detection in GP and emergency settings. She strongly believes that early recognition is literally lifesaving.

Her story underlines why a dedicated, well-informed APS charity is so vital. Not just to support patients, but to hold the health system accountable for its misgivings, whilst also driving education and ensuring that no one else is left in the dark with APS.

2.5. Market Research

For this section, I will be referencing the website and social media channels of the leading antiphospholipid syndrome support group from the United Kingdom, APS Support UK (APS Support UK, 2025). I am looking in-depth at their website and the facilities they offer so that I may be able to identify some useful additions for my own organisation, as well as observing which potential pitfalls to avoid.

APS Support UK, or as known pre-2016 “Hughes Syndrome Foundation”, is a non-profit organisation that is funded through both donations and the national lottery. The mission of APS Support UK is to promote earlier diagnosis and provide support to anyone affected by antiphospholipid syndrome through awareness, education, and research.

To fulfil its mission, the charity focuses on the following core objectives:

Raising awareness of APS within the medical community
Providing clear, accessible information and understanding to those affected by APS
Supporting and promoting research into the causes, diagnosis, and treatment of APS

As a small but impactful organisation, APS Support UK claims to consistently exceed expectations. With the continued support of its dedicated volunteers and community, the charity remains committed to making a meaningful difference for those living with this condition.

One aspect of APS Support UK’s website that I find very forward thinking and wish to replicate through my own non-profit organisation is their GP online training course, which is accessible through their website. I find this a very clever concept, and after talking with trainee nurse Ellie, I am aware that she believes that healthcare professionals are, for the most part, always keen on expanding their knowledge - especially if said knowledge comes free.

Unfortunately, I find the rest of APS Support UK’s website rather lacking in other facilities. Based on my research via public survey, people are most attracted to information through social media and, more specifically, short-form content. This refers to videos, most commonly vertical in layout, that can be posted to social media channels such as TikTok and Instagram. Short-form videos have certain advantages in the marketing stratosphere, especially amongst younger people of more recent generations:

73% of consumers prefer short-form content to learn about products or services
57% of Gen Z prefer short-form content to learn about products or services
47% of marketers say short-form videos are more likely to go viral

[All statistics courtesy of Albert Mosby (2025)]

APS Support UK doesn't have any short-form content. The organisation is spread across three social media channels: Facebook, Instagram and X, with the same posts being added to all three whenever information is uploaded - most likely through a scheduling tool such as Hootsuite. The only exception to this is X, where information regarding research from other accounts is often re-posted to APS Support UK’s page. My research leads me to believe that this is a large gap that could be explored to get information more wide-spread at a faster speed, as the lack of short-form content truly hinders the performance of the social channels as well as the overall message that APS Support UK are trying to get across.

The format of the campaign for my non-profit organisation has seemingly already been decided, with so many key statistics and opinions pointing towards social media content creation as the best way to get information to the highest numbers. However, I am aware of generational differences as well as personal preferences, so I do not want to solely focus on social media. I would like a dedicated website, as APS Support UK has, with similar functions: a newsletter, recent news, a plethora of information regarding APS and, in my opinion most importantly, a forum where people can submit their experiences of living with APS, whether as a patient or a friend/family member of someone else with the condition. I think that having this website provides a constant backdrop of information. If the charity only posts information on social media, then there is no reference point for all the information behind one click - thus, in my opinion, a website is suitable no matter how focused on social media my non-profit organisation is. This medium of information must be kept up to date if it is to prove useful and successful, however. The APS Support UK website has a specific link for the ‘Latest News’ surrounding antiphospholipid syndrome, and the last update on this thread was added on September 4, 2019. This will create negative press for surrounding the website, as it could be viewed as pointless due to a lack of current information.

I also want to organise as many impactful stunts as possible, especially when launching the organisation. I believe that it is vital to establish a loud and clear message as publicly as possible, as given my organisation is non-profit, I will be relying on public interest and momentum to guarantee collaboration and donation. APS Support UK has not organised any notable stunts throughout their history, and I believe that this hurts its chances of growth.

3. Campaign Plan Introduction

To best show the structure, timescale and techniques that I aim to achieve, I have created a 6-month timeline based on the information that I have collected from my survey, interviews and research. I feel that this strategy will give me the best possible base to publicise, launch and grow my online-based non-profit organisation focused on raising awareness for antiphospholipid syndrome. This plan focuses on high-impact stunts, strategic and well-placed partnerships, and social-first campaigns to maximise reach and engagement.

Before beginning the timeline, it is worth noting that the style of campaigning I intend to use is very much guerrilla marketing alongside traditional marketing. Guerrilla marketing is a low-cost marketing strategy that uses surprise, creativity, and innovation to promote a brand, cause, or message. It is used to create memorable and emotional connections by engaging audiences in unexpected ways, often in public spaces. I feel that as an unknown organisation starting with little to no budget, this is the perfect way to approach campaigning for my non-profit charity. I will also be using Hootsuite for all social media scheduling (aside from TikTok as this is not supported), as it is easier to stay on top of posts that way.

This campaign will run from February - July 2026.

3.1. Month 1: Foundation & Soft Launch

The goal for the first month is to establish identity, infrastructure, and early recognition amongst both the public and hopefully the media. As this is a non-profit organisation, I will be aiming to stay within the budget of £1000. I feel that this is fair, as this is calculated at both money I can fund myself as well as charitable donations throughout my campaign.

In weeks 1 and 2, the organisation will begin by finalising the name, logos and visual identities that it feels will best represent and suit its aims and goals. I have established that the name will be Lifeblood: APS Support, as this is obvious as to the cause and tells people who are not aware of antiphospholipid syndrome that the disorder is blood related.

Then I will move onto setting up the website, most likely using a programme such as Squarespace or Wix. The domain for the website will be lifebloodaps.org, as it is clear, concise and memorable - ideal for a non-profit organisation. This website, as discussed before, will have clear pages and links to them, with dedicated sections to awareness, signs and symptoms, news, a donations page, other people's stories and a free GP learning platform which I will, at the time of creation, work alongside healthcare professionals to draft and perfect. The website will also include a newsletter sign-up, for which I will write a new newsletter every month that includes scientific advancements and information about potential events for people to attend. After the website is complete, I will secure all the social media handles that I wish to post content on. These will include, but are not limited to: Facebook, Instagram, Snapchat, TikTok, YouTube, X and LinkedIn. Lastly, I must ensure that I register the non-profit officially and apply for both social media charity status and Gift Aid.

In week three I will ‘soft launch’ my campaign with short, barely even ten second clips across all social media channels, simply titled the “What is APS?” series. This will allow me to build a certain amount of traction early into the organisation launch and build interest through simply asking one question repeatedly. ‘#whatisaps’ would also accompany these posts. As week four begins, I will start an Instagram, Snapchat, TikTok and YouTube Shorts campaign in which people share short, one-minute videos detailing their experiences with APS, and how their diagnosis has changed their lives. These clips will be short, raw, and emotional, to gain the attention of the viewer. Alongside these videos will be the first stunt of my campaign: the ‘#3yearstoolong’ movement. This hashtag will be used in tandem with a consistent, branded filter, that I will share onto all social media platforms so that others who are affected and inspired to join the movement may also do so. This campaign is focused solely on my research conclusions that estimate the approximate average time for a diagnosis of APS to be around 3 years, and I believe that this is the correct way to firstly spread the message about APS: with one of the most shocking statistics.

3.2. Month 2: Awareness Activation

Month 2 is awareness month. This means that I am going to take the foundation that was being laid in month 1 and begin to build atop it, with my first task of this period being to write press releases with details of stories and motivations behind my actions. These are to be released to health writers and local news sources, with the latter also being provided with a plethora of shocking diagnosis delay time facts, allowing them to have more background and understanding of the ‘#3yearstoolong’ movement. Whilst speaking about creative writing, this will also be the month that I launch my ‘signs, symptoms and stresses’ charts. These are going to be for display in doctors’ surgeries and are a checklist of APS symptoms that normally would not be given a second look - such as consistent migraines, fatigue, joint pain, blurred vision and other potential warning signs. These will be sent to all local doctors’ offices via post or PDF if they wish to print them themselves. Whilst working with doctors for the first time, the first Instagram, Facebook and TikTok live videos will be posted. These are a great way to act as essentially an open forum, where people can ask any questions they like regarding APS and other blood conditions - and they will be given expert, foolproof answers, as the lives will be hosted by qualified rheumatologists and haematologists that wish to help spread awareness.

In the final week of the month, I will launch 2 online additions: Instagram and X will host the “Red Alert” week, where every day a new, commonly overlooked symptom will feature as a post, highlighting that people should always get their symptoms checked no matter how simple they may seem. The second addition will be to the website, where I will create the “Doctor’s Notes” wall. This will be a virtual room accessible through the website, similar in design to websites such as Padlet, where patients can “submit” any responses or hesitations from either themselves or healthcare professionals that delayed their diagnosis. I believe that by giving people access to real examples of when patient’s symptoms were overlooked, more people will take their health seriously.

3.3. Month 3: Campaign Collaboration & Real Talk

The third month is going to be key for taking my campaign from local to national. It is in this month that I will establish links with influencers and other charities. The first way that I will do this is by partnering with either Lupus UK or Thrombosis UK and having a joint week of APS content across all social media channels. This will include short-form video content, factual posts, stories from both doctors and patients, and, most importantly, celebrity endorsement. Through my research, I have concluded that the most effective influencer to work with would be Christine McGuiness. Christine is a British model and television personality, known for her work as the former Miss Liverpool and for appearing on different reality TV shows, including The Real Housewives of Cheshire and various documentaries. She has spoken about being diagnosed with APS, particularly in relation to her pregnancy complications and fertility issues. I believe that by working with Christine, we can begin to reach a wider audience through notability.

My first way in which I will work with Christine is my idea for an online challenge, titled ‘#testforAPS’ challenge. Starting with Christine, who can then call upon and tag other creators, influencers will either get tested for APS or speak on camera about diagnosis, passing the challenge on to another creator when they’re finished. This will create a louder buzz than previously had surrounding my organisation, culminating in the last stunt for month 3: a petition. I will launch a petition in the last week of the third month, calling on MPs to have APS included in standard GP training, as it currently is not - as established by Ellie, the trainee nurse that I spoke with. This will be the biggest public move by Lifeblood: APS Support up to that point and is perfectly placed to bring together all target audiences: those who have APS, those who are unaware of APS, and healthcare professionals. By getting voices heard in parliament, the whole country can access information about my organisation for the first time.

3.4. Month 4: Community and Education

Month 4 is the month to continuously grow my organisation’s engagement, and I will achieve this through trust and educating followers at every given opportunity.

The website will be given an update, with the introduction of the online resource hub. This will be accessible via all social media channels as well, and will contain such tools as fact sheets, GP conversation scripts, APS guides and fertility guides, as APS can have a negative effect on fertility rates in women. These utilities are for the use of all audiences that I am trying to reach, as all who read them will surely be able to learn and retain some new information. However, I also intend for these resources to be printable and available for use in schools, after school clubs (such as Scouts or Guides) and around public buildings such as libraries, shopping centres and even university campuses. In my survey, despite social media dominating answers, many people were still interested in seeing some form of physical media, and I completely agree that there should be some at least.

Continuing with the educational themes as discussed, I believe that it would be beneficial to launch animated explainer videos, such as ‘APS in 60 seconds.’ These would be short-form content, ready to post onto all social media channels, that are able to explain in a friendly and non-condescending way the dangers, early warning signs and how to get diagnosed with APS. I believe that creating content that is tailored to children is important - although admittedly this was not my originally stated target audience, I believe that teaching children the dangers of APS will result in future generations being more aware as time progresses.

3.5. Month 5: Publicity and Conveying Messages

By this time in my campaign, my non-profit organisation will have been used to promote awareness, education and change surrounding antiphospholipid syndrome. In the fifth month of campaigning, the organisation must become more than this - it must become loud and thought provoking. So, I will organise the first APS Walk of Awareness. Through the centre of London, of course, due to publicity there being so readily available and high, volunteers dressed in all red and carrying placards with real-life stories of either loss of loved ones, or missed diagnoses, or how they have struggled living with APS will walk through areas such as Westminster, Whitehall and along the mall towards Buckingham Palace.

I have not until this point had any public stunts that carry the goal of increased volume rather than education, and around this time feels as though it would best suit my audience's wants and needs. After people have realised that there is an issue, it is best to show them that noise surrounding it is the best way to get media attention. Because ultimately, as a non-profit organisation, I am targeting earned media due to its lack of cost. There will be little spare budget throughout this entire process, so by engaging audiences in new and fresh ways I can ensure that my charity earns media coverage, with donations and funding as a result.

I will also launch a podcast, available through Spotify and Apple Music and accessible through the Lifeblood social channels. Titled ‘Blood Talks’, it will be a continuous, weekly podcast featuring both myself, an influencer/celebrity guest who feels strongly about my organisations’ cause, and also at least one expert in the medical field - it could be a rheumatologist, a haematologist or a consultant - talking about advancements within Lifeblood, about news surrounding APS and also taking live questions from listeners via a call-in setup.

3.6. Month 6: Awareness Day and Big Media Push

In the last month of my first campaign, I want to drive media coverage nationwide. I will create and launch the first National APS Awareness Day. Although there is already an APS Day in the UK (June 9), it is never mentioned nor acknowledged. So, the National APS Awareness Day will take place on July 6, which is also Frida Kahlo’s birthday, a famous Mexican artist who sadly passed away in 1954 from what has now been discovered as complications caused by antiphospholipid syndrome.

This day will be both a celebration of people’s stories of living with APS, as well as an outcry for more and more people to recognise the symptoms and issues caused by the disorder. I will secure press with news outlets such as The Guardian, BBC Health, Metro and other various medical journals, as I can present my organisations’ aims and message whilst also having six months of work, research and community-driven statistics to help me secure high-profile news stories. Once press releases have been sent announcing the start of National APS Awareness Day, I can begin searching for volunteers for my campaign's final stunt - ‘Invisible Illness.’ This will involve various cities around the UK, in which 2000 volunteers will gather, and stand in one place, in silence, for 5 minutes, on July 6. This is to highlight the invisible struggle of APS, and I will capture all the events with drone footage. The significance of 2000 people per city is that APS affects around 1 in every 2000 people in the UK.

3.7. Costs and Budgeting

Register the charity as a Company Limited by Guarantee (CLG) - £12 (+house as collateral, I would just use my house for this)
Apply to turn Lifeblood: APS Support into a registered charity - FREE (but it must be a CLG first)
Website - £210 (6 months of Squarespace subscription)
Domain name and email address - £50 per year
Printing (for GP surgery charts) - £100 (for 200 copies, the rest are to be sent by PDF)
Postage to GP surgeries - £50
Partnering with Christine McGuiness - FREE (if she agrees to support my cause voluntarily. I will approach her through DM or email respectfully)
Video content production for social media - FREE (using Canva, CapCut, or volunteers with video editing skills)
Petition launch - FREE (via change.org or Parliament UK petitions)
Website update (to add the resource hub) - FREE (DIY via Squarespace)
Printable resources (fact sheets, school materials) - FREE (ask schools and public venues to print these themselves)
Explainer video animations - £50 (using PowToon, Animaker or Canva Pro. Or use volunteer animators)
APS Walk of Awareness (permits and signs) - £100 (I can achieve this with volunteer help. Also, no permits are needed in pedestrian zones)
Podcast production - £60 (for 6 months of Spotify. I will use Anchor.fm, a podcasting site that is available for use through a Spotify subscription)
Podcast equipment - £100 (for basic microphones)
Volunteer coordination for "Invisible Illness" event - FREE (via all social media channels and the Eventbrite website’s ‘free tier’)
Drone footage - FREE (using volunteer videographers and volunteer drone pilots)

Total amount spent: £732.00

I believe that the budget I set was well spent, with every task that I put into the plan being executed at a cost-effective level, whilst also relying on my own hard work plus the inclusion of volunteers as the organisation grows. All prices were researched and found by myself, and I fully believe that this organisation could be made public and successful with this level of budgeting.

3.8. After the Campaign and Concluding Thoughts

After this stunt on National APS Awareness Day, my campaign will come to an end. Of course, all aspects of my organisation that are evergreen, such as the podcast, National APS Awareness Day, social media posts, the website and educational resources will all remain available and will continue to be made accordingly by both me and any volunteers that have decided to join my non-profit organisation.

I will continue to create content and keep the website and social media channels totally up to date - as this is what both Polly and I concluded was the main issue with APS Support UK in our interview about lack of visibility. I will also ensure that work with the NHS continues, working closely with healthcare professionals to deliver up-to-date and important advice to both GPs and the public.

This six-month campaign marks the strategic launch of Lifeblood: APS Support, designed to raise national awareness, drive earlier diagnosis, and establish a long-term support network for those affected by antiphospholipid syndrome. With a mix of an innovative website, grassroots engagement, educational outreach, and media activation, the campaign is structured to build momentum and visibility through both earned media and word of mouth. Crucially, the foundation laid here will remain sustainable after the campaign finishes - positioning Lifeblood as the trusted voice within the APS community. As the organisation grows, it will continue to evolve through partnerships, documenting lived experiences, and a commitment to life-changing and life-saving education.

4. Example Content

Example 1:

This is a press release designed to be sent to local media, such as Gloucestershire Live and BBC Gloucestershire, as mentioned in month 2 of my campaign plan. This is to announce my new campaign and convey my message to local news outlets for the first time.

New Charity ‘Lifeblood: APS Support’ Launches to Raise Awareness of Underdiagnosed Blood Disorder

CHELTENHAM, UK / March 2025

A new non-profit organisation, Lifeblood: APS Support, has officially launched with a mission to raise awareness amongst healthcare professionals and the public, support patients, and push for earlier diagnosis of antiphospholipid syndrome (APS) - a serious but often overlooked autoimmune condition affecting the blood.

Founded by Matt Joiner, Lifeblood: APS Support began its journey with a clear goal: to establish an identity, build public recognition, and provide education about the signs, symptoms and impacts of APS. The organisation’s launch budget of £1000, funded through personal investment and donations, reflects its commitment to creating real change while remaining community-focused and transparent.

The charity has already unveiled its branding, including a direct name and logo. Its website, lifebloodaps.org, will serve as a hub for resources, stories, a donations platform, and even a free GP learning portal developed alongside healthcare professionals. Social media channels across Facebook, Instagram, TikTok, YouTube, X, LinkedIn and Snapchat are now active, ensuring widespread reach to a range of audiences.

In its first month, Lifeblood: APS Support launched the ‘#whatisAPS’ campaign — a series of short videos across social media aimed at sparking curiosity and driving public engagement. Later last month, the organisation debuted the ‘#3yearstoolong’ movement, highlighting research showing that APS patients wait an average of three years for a correct diagnosis — often with devastating consequences.

"We’re building something that doesn’t currently exist: a real, accessible support network for people affected by APS and a national voice demanding better education and faster diagnoses," said Matt Joiner, founder of Lifeblood: APS Support. "By starting at a grassroots level, we hope to grow into a real force for change."

People can find out more information by visiting www.lifebloodaps.org or following @lifebloodaps on all major social platforms.

Example 2:

This is a press release designed to be sent to large media outlets such as The Guardian, BBC Health and Metro, as mentioned in month 6 of my campaign plan. This is to announce the launch of ‘National APS Awareness Day’ as well as ‘Invisible Illness’ - the stunt involving crowds of people in major cities.

First National APS Awareness Day Launches to Highlight Life-Threatening Misdiagnoses

CHELTENHAM, UK / June 2025

A new national health awareness event is launching on July 6, as Lifeblood: APS Support announces the first-ever National APS Awareness Day.

Antiphospholipid Syndrome (APS), an under-recognised autoimmune disorder linked to blood clots, strokes, and pregnancy loss, affects around 1 in 2,000 people in the UK — yet remains largely invisible in public health discussions. Although an International APS Day exists (June 9), it receives little recognition domestically. Lifeblood’s initiative sets out to change that.

July 6 also marks the birthday of Mexican artist Frida Kahlo, whose death in 1954 is now believed to have been caused by APS-related complications.

The day will be marked by a UK-wide demonstration, "Invisible Illness," where 2,000 volunteers per major city will stand silently for five minutes, representing those living with APS. Drone footage will capture the powerful visuals, aiming to bring national attention to a condition often hidden behind misdiagnosis and misunderstanding.

"APS patients often face years of being dismissed or misdiagnosed," said Matt Joiner, founder of Lifeblood: APS Support. "We want to make their struggles impossible to ignore."

Over the last six months, Lifeblood has gathered new research and community-led statistics that show growing public engagement with APS awareness. Unfortunately, symptoms such as migraines, chronic fatigue, and blood clotting continue to be overlooked, leading to preventable complications and deaths.

National APS Awareness Day will be supported across social media, news outlets, and public demonstrations, with a call for urgent improvements in healthcare training and patient support.

Volunteers for taking part in the ‘Invisible Illness’ stunt can find more information through our website, available at www.lifeblood.org or follow @lifebloodaps on all major social platforms.

Example 3:

An interview feature, to be used on my website. This will give readers and viewers a chance to see into the thoughts of someone that suffers from APS and may help to give them some ideas as to why raising awareness is so important for patients to get the correct treatment.

"I Had to Become My Own Expert": An APS Patient on Life with the Disorder and Why Change Is Long Overdue
By Matt Joiner

Polly Wailoo, Leicestershire, was just ten years old when she was finally diagnosed with antiphospholipid syndrome (APS), a chronic disorder that affects the immune system and makes the blood too thick. But the road to that diagnosis had already been too long and too painful.

“I’d been having migraines, chronic fatigue, and strange symptoms for years,” she says. “It wasn’t until I had a deep vein thrombosis at age nine that they finally tested me for APS. Before that, it was all dismissed as stress or bad luck.”

Polly is now in her 20s and has been living with diagnosed APS for over a decade. Her story is one of resilience - but also one of frustration with a system that still fails to recognise and respond accordingly to the seriousness of her condition.

“It’s not just one clot and you’re done.”

While APS is often associated with blood clots, Polly is quick to point out that its impact goes much, much deeper.

“It’s described as an invisible illness for a reason.” she says. “I’ve had multiple clots over the years, and I now live with heart valve issues. APS doesn’t stop after diagnosis; it needs constant, careful monitoring.”

Despite being on lifelong anticoagulation therapy, Polly says there is a widespread misconception that medication alone is enough. In reality, APS requires a multi-faceted approach - one which she says is still largely absent from most care settings.

A System Not Set Up for APS

Polly believes there are three major failings in the current UK healthcare response to APS:

Diagnosis delays — “It took me four years to get a diagnosis.” The national average delay is about three years. That’s three years too long.
Lack of specialist access — “Unless you’re lucky enough to live near a major city like London, good care is rare.”
Inadequate long-term management — Most care is focused only on clots. But what about fatigue? Mental health? Fertility? Patients are left to figure it all out themselves.

Even now, she says, many patients are handed a leaflet and told little more than “you’ll be on warfarin for life.”

“There’s no consistent GP training, no national guidelines, and no integrated care. That’s why I believe APS patients are still being failed.”

What Needs to Change?

When asked what she’d change if she could, Polly doesn’t hesitate.

“I'd set up a national APS service just like we have for all the other rare conditions, [with] specialist clinics that cover not just diagnosis and blood testing, but for management, cardiology, neurology, maternity services and mental health. And I'd like to make a huge campaign about the whole thing, with a really great website and everything like that. I'd make sure that GPs and A&E doctors are properly trained. [Catching APS early] is literally lifesaving.”

Advice for the Newly Diagnosed

For anyone recently diagnosed with APS, Polly’s advice is clear and powerful: “Find support. Learn everything you can. And don’t be afraid to push for the care you deserve. You have to be your own expert right now - but that needs to change.”

As APS slowly gains more public attention, voices like Polly’s are lighting the way forward - not just for awareness, but for action. And at Lifeblood, we couldn't be prouder than to see people up and down the country finally giving APS the treatment and attention it deserves.

Example 4:

A journalistic feature written for the use of both the organisations’ website and the issue to other news outlets. This feature uses both research and the inclusion of all the work Lifeblood has done to show how much work is being done to make APS a more visible condition. This feature is written based on my experiences, and would, in my opinion, make an excellent piece of writing to have as an introduction to the website, or perhaps when people sign up to the newsletter.

“What Is APS?”: The Organisation Making Noise for a Silent Killer

By Matt Joiner

When 16-year-old Matt Joiner received a life-changing diagnosis of antiphospholipid syndrome (APS), there was little fanfare, even less understanding, and virtually no resources to turn to. Now, years later, that moment is responsible for a growing movement that is shedding light on one of the UK’s most under-recognised autoimmune conditions - one that can cause strokes, blood clots, pregnancy complications, and heart attacks if left undiagnosed.

Despite APS affecting an estimated 1 in every 2,000 people, most Brits have never even heard of it. That reality was made starkly clear in a recent survey conducted by Lifeblood. The results were shocking: over 84% of respondents had never heard of the condition, and 100% were unable to recognise its signs and symptoms. Not a single person had seen online or physical information about APS awareness or treatment.

“I knew there was a lack of awareness,” says Matt, “but seeing the numbers so clearly - especially amongst young people actively engaging with health content online - was genuinely alarming.”

These findings formed the foundation for the launch of Lifeblood: APS Support, a bold, content-driven organisation with a campaign targeting both the public and healthcare professionals. Built on a six-month roadmap and a modest budget, Lifeblood did what no organisation had done before: bring APS into the public conversation through grassroots campaigning, creative stunts, research-backed education, and social media targeting.

So, what did Lifeblood do?

Their campaign kicked off with the soft launch of the “What is APS?” series - short, striking social media clips repeatedly asking one question to provoke curiosity. Hashtagged #whatisAPS, the videos were deliberately minimalistic, giving way to more emotionally charged content. Soon followed #3yearstoolong, named after research showing that it takes an average of three years to receive a proper APS diagnosis. The message? That wait is unacceptable.

They then escalated awareness through physical and digital content alike. “Signs, Symptoms and Stresses” posters were distributed to GP offices across the country, highlighting the often-overlooked signs of APS - chronic fatigue, migraines, joint pain, and visual disturbances. Alongside this, the organisation hosted live Q&A sessions with rheumatologists and haematologists on Instagram and TikTok, transforming static education into real-time interaction.

Going National

Lifeblood is not just about education; it’s about making noise. As Lifeblood introduced the APS Walk of Awareness in central London, volunteers dressed in red and carried placards detailing real stories of loss and misdiagnosis. “It’s time APS was visible,” said Matt Joiner. “And that starts with literally being seen.”

To deepen the public dialogue, Lifeblood also launched their podcast ‘Blood Talks,’ combining lived experience with medical expertise in an accessible, weekly conversation format. It’s designed to empower, inform and spark ongoing discussion across generations and communities.

National APS Awareness Day: A Movement Made Visible

All of this built toward the cornerstone of Lifeblood’s work - National APS Awareness Day on July 6. The date is symbolic: it marks the birthday of artist Frida Kahlo, who is now believed to have died from complications linked to APS. “She’s an emblem of unseen struggle,” Matt said, “much like the condition we’re fighting to expose.”

On the day itself, 2,000 volunteers gathered in silence in cities across the UK, representing the 1 in 2,000 affected by APS. The stunt, titled ‘Invisible Illness’, served as a visceral reminder of how many live with the condition, unseen and unheard.

The hope is that this silence will finally make people listen.

A Lifeblood for Change

Through active use of social media, direct community engagement, and tireless advocacy, Lifeblood: APS Support is laying the groundwork for a future where no one is told their symptoms are “just stress,” “just migraines,” or “just bad luck.” By centring patient voices and medical truths, it demands recognition - not just from the public, but from policymakers, GPs, and the NHS itself.

“Lifeblood was born out of frustration,” Matt reflects. “But now, it’s driven by hope.”

With each post, video, and walk, APS becomes less invisible - and that visibility just might save lives.

Bibliography:

Ali Duarte-García MD, Michael M. Pham MD, Cynthia S. Crowson PhD, Shreyasee Amin MD, MPH, Kevin G. Moder MD, Rajiv K. Pruthi MD, Kenneth J. Warrington MD, Eric. L. Matteson MD, MPH (2019) The Epidemiology of Antiphospholipid Syndrome: A Population-Based Study. Available at: https://acrjournals.onlinelibr... (Accessed: 16/4/25).

Antiphospholipid Syndrome (APS) - Hughes Syndrome (2025) Available at: https://111.wales.nhs.uk/antiphospholipidsyndrome(aps)hughessyndrome/#:~:text=APS%20can%20affect%20people%20of,reduced%20if%20it's%20correctly%20diagnosed. (Accessed: 16/4/25).

APS Support UK - GP Online Training Course (2025) Available at: https://aps-support.org.uk/self-help/gp-training-course?utm_source=chatgpt.com" class="redactor-autoparser-object">https://aps-support.org.uk/sel... (Accessed: 20/4/2025).

Hansard - UK Parliament (2015) Available at: https://hansard.parliament.uk/... (Accessed: 20/4/2025).

APS Support UK (2025) Available at: https://aps-support.org.uk/ (Accessed: 23/4/25).

Mosby, A. (2025) 20+ Short Form Video Statistics of 2025 (Usage & Trends). Available at: https://www.yaguara.co/short-form-video-statistics/#:~:text=73%25%20of%20consumers%20prefer%20short%2Dform%20videos%20to%20learn%20about,about%20a%20product%20or%20service. (Accessed: 23/4/2025).

My Final Year Project: How to Launch a Non-Profit Organisation

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