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I still believe everything I wrote in this post from three years ago. And with the Australasian Diabetes Congress due to kick off next week, I thought it a good time to revisit.

People with diabetes have a place at diabetes conferences – even those designed for healthcare professionals. I truly believe that #NothingAboutUsWithoutUs needs to be the overarching philosophy when it comes to all diabetes activities, services and resources. Until we get to that place, I – and many others who feel the same way – will continue to plead our case for inclusion.

Put us on the program, on planning committees and at the front of your minds. 

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Following the announcement at the end of last week from Diabetes UK that a new CEO had been appointed, there was much chatter online about whether or not the best person had been selected for the role. I have no opinion on this. I do not necessarily agree that you need a person with diabetes to be the CEO of a diabetes organisation – there are many other ways that meaningful engagement can take place ensuring that the organisation is representing the needs of people with diabetes.

What I was far more interested in was the direction the discussion took – specifically about the inclusion – or, as was being discussed, not – of consumers/patients/PWD/whatever you want to call us at professional conferences.

I watched on in silence as healthcare professionals, PWD and consumer groups all weighed in on the subject.

I am rarely a fence sitter, and on this issue, my position is very clear. Very, very clear.

I have yet heard a good argument as to why PWD should not attend diabetes conferences. In Australia, just as in the UK, we have the same limitations about people with diabetes having access to drug-branded information. This is archaic because, well, the internet. But whatever. (Read more here.)

Notwithstanding these code regulations, there is no reason that a PWD should not be welcome at a professional meeting about diabetes, hearing about diabetesresearch, learning about diabetes medications and technology and talking with the healthcare professionals working with people with diabetes. And if it is deemed that we are not fit to see the brand names of drugs, then keep us out of the exhibition spaces, but allow us to attend information and networking sessions. (For the record, I don’t support that idea either, but if that is what is necessary for us to be able to attend the sessions, then so be it.)

I would go one step further. PWD should be involved in the planning of these meetings. Why? Because surely if HCPs working with PWD are hoping to improve their knowledge and understanding of diabetes, a big part of that is gaining a better understanding of people with diabetes. And there is no one who gets that more than those of us living with diabetes.

I absolutely do not subscribe to the ‘why can’t we have a professional conference for health care professionals’ viewpoint. Well, of course you can. But there is no reason that PWD should not be involved in this and attend alongside healthcare professionals.

I’ve been more than a little vocal on this in the past. Search ‘consumer involvement’ or ‘PWD at diabetes conferences’ on this blog and you might just come up with a few things. I’ve given talks both here in Australia and overseas about it. I constantly expound the value of the consumer voice and consumer participation and consumer involvement.

The thing that interested me in the discussion I was following was just how hostile it was at times. With 140 characters or fewer at our disposal, we can’t always be as tactful as we might be in person. Sometimes, being direct is the only way. And knowing a few of the people involved in the discussion, tact is perhaps not a characteristic that they generally employ. I say that without any snippiness at all – it is part of the way they get their point across.  I get it – I am often accused as being like that and I wear it as a badge of honour. As far as I am concerned, the involvement of PWD is non-negotiable and if I sound pissed about it, I probably am!

But being hostile and aggressive is not likely to result in a favourable resolution.

Working for a diabetes organisation puts me in a unique position. As part of my work, I get to attend the very conferences from which other PWD are excluded. Plus I am frequently invited to speak and this privilege is due to a combination of my diabetes org work and also my work as a blogger and diabetes activist that I do outside of paid employment. It’s a sticky situation that I manage as best as possible. There are disclaimers everywhere and even the whiff of a conflict of interest is declared.

However, there is one thing that I have learnt from ‘being on the inside’ and that is working collaboratively is highly likely to produce results more than being combative. There is a lot of negotiating required at times and an understanding that things take time. Sometimes lots of it. It’s taken me a lot of time to understand that!

Call me – and those who are trying for a more collaborative approach – political or bureaucrats. You can think we’re sell-outs. We’re not. At all. We actually have a seat at the table and are working for people with diabetes. And you want us sitting at that table! Come join us.

So, think you want to get involved, but not sure how? There are myriad ways that you can try to work with organisations. If paid employment is not what you are looking for, there are many volunteering opportunities including Boards (some may be paid positions), advisory panels, expert reference groups or simply, pick up the phone and pitch your idea!

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The Monday after National Diabetes Week is a chance to take stock, take a deep breath and take a moment to look back over the busy days.

This year’s campaign was terrific in that the messaging was strong and it got a lot of attention. It was great to see the same information being rolled out across the country, and shared internationally, too. I certainly believe the campaign’s main theme of needing to detect and treat all types of diabetes sooner resonated with people across the globe.

So, there are some of my highlights from last week:

Frank Sita can certainly claim best on ground for his relentless support of the campaign. He blogged, vlogged and SoMe’d the hell out of the campaign and was also interviewed in a great piece for The West Australian newspaper. (Plus, he nailed the #LanguageMatters talk with the journalist.) Nice work, Frank!

Diabetes NSW & ACT held their Diabetes Australia Research Program Awards on Thursday night, using NDW as an opportunity to underline the importance of research, and recognise just some of the wonderful researchers working to unwrap the secrets of diabetes.

There are far too many stories of missed type 1 diabetes diagnosis, and many were featured last week. You can see these stories on the Diabetes Australia Facebook page. It’s simply not good enough that people have to become really, really sick before they are correctly diagnosed. Everyone must know the 4Ts.

 

There was a most welcome announcement with Health Minister Greg Hunt launching Australia’s first national diabetes eye screening program to reduce vision loss and blindness in people with diabetes. this is a great example of Government, and industry (Specsavers will also be contributing to the program) working together and with health groups to support people with diabetes.

Bill Shorten’s Friday evening call to the Government to broaden CGM funding was beautifully timed and was a great way to end the week, providing an awesome bookmark to the previous week’s piece on The Project.

 

Theresa May would have no idea that she provided an outstanding opportunity for us to get in a little #NDW2018 last-minute advocacy and awareness across the national press, just by wearing her Libre sensor.

And so, it’s a wrap. Except, of course it isn’t. We still need to remind people of the signs and symptoms of diabetes. We need better detection programs. We need more awareness. This campaign doesn’t get boxed up and archived, never to be thought of again. We must keep talking about it.

Of course, National Diabetes Week may be over, but for those of us living with it, every week is diabetes week. And so on we go: ‘doing’, ‘living’ and ‘being’ diabetes.

Without fail, the first thing I put into my schedule when I am attending either ADA or EASD is the update from Life for a Child (LFAC). It’s usually held on the first day of the conference, bright and early in the morning and, for me, it sets the scene for the conference. It anchors me, so that throughout the remainder of the meeting, while I am wandering around a fancy exhibition hall, or listening to talks about the latest in technology (usually what I am drawn to), I must never forget that for some, access to insulin, diabetes supplies, education and support is incredibly difficult.

At ADA this year, there was no update session. Instead, the LFAC team gathered some of the advocates who were there so we could meet to discuss how we could continue to work together, through initiatives such as Spare a Rose, to raise funds for, and awareness of, the program.

L-R Dr Graham Ogle (General Manager LFAC), Grumps, Emma Klatman (Health System Reform Specialist LFAC), me, Angie Middlehurst (Deputy Manager & Education Director LFAC) and Manny Hernandez.

When I am writing and talking about LFAC, I usually do it in the context of asking – urging – people to consider making a donation. Around Valentine’s Day, the one rose = one month of insulin equation is repeated over and over again to highlight just how little it takes to make a difference to a young person with diabetes in a developing country.

But I’m not sure that everyone knows just how far reaching and important the work carried out by LFAC actually is, or how donations are used. Recently, they released their annual report, highlighting just some of their successes, and I thought I’d share some of them here.

To start with, last year LFAC helped over 18,500 young people from 40 countries.

Support offered by LFAC goes beyond just providing life-saving insulin for young people with type 1 diabetes. Other diabetes consumables, such as syringes and blood glucose monitoring kit is available. A1c checks are provided, providing baselines and ongoing data for centres in developing countries. Services such as education, workshop and resources are developed, translated and distributed, and support for healthcare professionals is offered.

In Haiti last year, 51 children attended a camp for children with diabetes – the first of its kind ever held in that country. (As someone who frequently speaks about the benefit of peer support, I know how amazing this would have been for the children who attended. Meeting other kids who instinctively ‘get it’ would be the same as the feeling I get when I meet and speak with others who are living with diabetes.)

LFAC also has an active research focus which is critically important in highlights aspects of diabetes, (including incidence, prevalence and mortality; cost of, and access to care; success of intervention and care-giving approaches; psychological impacts of diabetes), in young people in less-resourced countries. This research is vital in informing future programs, activities and services. LFAC research can be accessed here.

Life for a Child does all this and more, working towards their vision of a world where no child should die of diabetes. The fact that this should be their (or any organisation’s) vision – 97 years after the discovery of insulin – is heartbreaking.

Being a part of the extended Life for a Child family is one of the most important things in which I am involved. Writing blog posts and talking about the program sometimes seems like such a small thing to do, but I am committed to raising awareness of the issues faced by the young people the program helps, and raising funds so they can do more.

I have only touched on their important work, and despite the great achievements I’ve mentioned here and the number of young people benefiting from the program, there is still a waiting list for support.

Go here for details of how you can make a donation. Please. 

I had a great conversation the other day with someone who was interested to talk about diabetes and language with me. ‘I’m trying to get a better grasp of why it’s something so important to you, because, quite frankly, I couldn’t care less what people say about diabetes.’ 

This isn’t the first time people have asked me this. And it’s certainly not the first time I’ve been asked why I spend so much time speaking about diabetes language matters.

I know the reasons, but to be perfectly honest, I’m not sure that I have them especially well mapped out when I need to explain them. So, let me try here.

There is a tangled and complicated link between the words used when talking about diabetes, and how we feel about it and how diabetes is perceived by others. That link then goes off on all sorts of LA-freeway-like tangents to include diabetes and stigma, and discrimination.

The effects of how we frame diabetes can be felt by us individually. But they can also be far reaching and affect how others feel about diabetes.

We know that language has the potential to make people with diabetes feel judged and stigmatised. In fact, most PWD I know have at some time or another faced someone speaking to them using Judgey McJudgeface words. Of course, we all respond differently to this. For some people, it’s water off a duck’s back. They couldn’t care less what people say and just ignore it. For others, it’s almost a challenge – they use it as motivation to prove that they ‘won’t be beaten’.

But that’s not the case for everyone. For some people, it can be absolutely paralysing.

Fear of being judged and shamed may lead to some PWD to not wanting to attend HCP appointments and, as a consequence, falling behind on complication screening. Some PWD may not even tell their loved ones they have diabetes for fear of being judged. I have met PWD who made the decision to keep their diabetes a secret and for years, not telling another person. This can add to feelings of terrible isolation.

When diabetes is spoken about in stigmatising and demeaning ways, this leads to the spreading of misinformation. And this can have far reaching consequences.

We know that kids with diabetes may be teased by their schoolmates. Their teachers may not respond appropriately to diabetes because of the way diabetes is framed in the media or by others. We can’t really blame teachers. If diabetes is punchline fodder for every B-grade comedian, or an excuse to point fingers at those living with it by every tabloid news outlet, how can we expect anyone to take it seriously?

(And if right now you are thinking ‘This is why we need to change the name of type 1 diabetes’, stop it! People with type 1 diabetes shouldn’t be teased or mocked or judged, but neither should people with type 2 diabetes. This isn’t about people understanding the differences between type 1 and type 2 – this about understanding diabetes.)

The language we use when talking about prevention in diabetes – whether it be preventing type 2 diabetes or preventing diabetes-related complications – means that there is an underlying idea that developing type 2, or complications must be the fault of the individual. ‘If you can prevent it and haven’t, it’s your fault. You obviously lived an unhealthy lifestyle/are lazy/didn’t listen to your doctor/failed to follow instructions/refused to do what you were told etc.’.Can you imagine hearing that, or feeling that is what people think about you – all the time? This is the language – these are the words – used to talk about diabetes.

A couple of weeks ago in the UK, it was Prevent Diabetes Week. I saw countless tweets from people urging, begging, pleading with others to remember that type 1 diabetes can’t be prevented and the week refers only to type 2 diabetes. I wonder if those tweeting realised that comments such as these actually contribute to the stigma associated with type 2 diabetes? Of course type 1 diabetes can’t be prevented. But in many cases, neither can type 2 diabetes. There are so many non-modifiable factors associated with a type 2 diagnosis – factors beyond the control of the individual.

But let’s look beyond individuals, the health system and the education system for a moment. What else happens in other settings when diabetes is spoken about in stigmatising ways?

Health organisations, including diabetes organisations, frequently seek donations from the public to continue the important work they do. There is only so much money in the donation pie, and yet there are more and more competing organisations representing people with different health conditions wanting a piece of that pie.

Donations are harder to come by from the general community when there is the idea – the wrong idea – that diabetes is a largely preventable lifestyle condition that is the fault of those diagnosed. There is not the idea that people who have developed cancer brought it on themselves, even though we know that some of the risk factors associated with a breast cancer diagnosis are the same as for type 2 diabetes.

Research dollars for diabetes are far less than for other health conditions. We see that every year when successful NHMRC grants are announced. Diabetes is the poor cousin to cancer research and CVD research.

Diabetes is just as serious as any other condition that is worthy of research dollars and fundraising dollars. Yet because of the way we speak about it and the way diabetes as a condition has been framed, there is a perception that perhaps it isn’t.

Words matter. Language matters.

So, what I want to say to people who think that talking about language and words is a first world problem that only occupies the minds of the privileged is this: I acknowledge my privilege. But this isn’t simply about words. It’s about perception.

Until diabetes is considered the same way as other conditions that are taken seriously and thought of as blameless, the trickle-down effect is people with diabetes will continue to feel stigma. Diabetes will continue to be the poor cousin of other health conditions and diseases because there is the misconception it is not as serious. People will not as readily make donations towards fundraising initiatives. Research dollars will continue to fall short, instead going towards ‘more worthy’ conditions.

That’s why I care so much about diabetes language. Because, language matters… so much.

Step right this way for some diabetes snapshots, information, and inspiration.

URGENT REQUEST TO PEOPLE IN AUSTRALIA FROM INSULIN FOR LIFE 

Insulin for Life Australia is in urgent need of Lantus insulin. If you have any no longer needed Lantus (or any other insulin, but Lantus is the priority right now), please consider sending it to Insulin for Life, Australia. More information available here. (If you are not in Australia, please use the same link and request information about where you may be able to send your donated insulin.)

Women’s work

International Women’s Day may have been a couple of weeks ago, but I loved this piece from the Diabetes Mine team paying tribute to women in diabetes.

Researching DIYPS

While we’re talking women in diabetes, this wonderful profile of Dana Lewis showcases not only her trailblazing work in DIYPS, but also how she has moved into researching the technology.

Diabetes devices overview

KQED Science ran this great overview of diabetes devices, including a well-balanced summary of current sensor-based glucose monitors. The piece features another legendary woman in diabetes, Melissa Lee.

Diabetes UK Conference wrap up

Last week, Diabetes UK held their diabetes professional conference in London. They extended the conference by as day to host the Diabetes UK Insider event for people with diabetes which provided a summary of some of the sessions from earlier in the week. (You can catch up on twitter by checking out #DUKPC and #DUKPCInsider tags.)

There was some stellar tweeting from both events from a few twitter stars and the blog posts are trickling through now.

You can read this one from Ros at Type 1 Adventures.

And Ascensia smartly engaged Grumpy Pumper once again to write updates for them, and you can find them here.

Four years

Kim Hislop is a pretty cool woman and recently she wrote a beautiful piece about the last sixth months, which she says have been some of the most difficult times of her life. Four years ago, Kim received a kidney transplant from her mother-in-law and, unfortunately, in September last year, the transplanted kidney was rejected.

Read Kim’s story, including how she is feeling about starting dialysis and what she hopes for her future. She is a truly wonderful person and has been such a wonderful advocate for sharing stories about living with diabetes complications. I really hope she keeps writing.

Please, if you are not already an organ donor, please consider becoming one. Information about becoming an organ and tissue donor in Australia is available here.

Pre-pregnancy planning study

Are you a woman with either type 1 or 2 diabetes aged between 18 and 40 years of age living in Australia? Then Helen Edwards wants to hear from you!

As part of her PhD research, Helen is developing a tool to determine how prepared women with diabetes are for pregnancy. The idea is for the tool to be used by diabetes HCPs working with women with diabetes contemplating pregnancy.

If you are interested in participating, please get in touch with Helen at helen.edwards@adelaide.edu.au.

Just Talking

Last month, I sat down with Christopher Snider and had a chat for his Just Talking podcast. By ‘sit down’, I mean that I was at home in Australia and it was the weekend and I was drinking coffee because it was crazy early, and he was at home in the US and it was … well, who knows when it was – I’m not got at time zones.

We chatted about weird accents (I think we were referring to mine), the Hemsworths and Nicole Kidman, #LanguageMatters (because it does) and other diabetes stuff too.

You can listen to it here.

#GBDOC

I’ve been given the keys to the GBDOC tweetchat bus for this week. I’m talking about including people with diabetes in … well … everything to do with diabetes. I suspect the #NothingAboutUsWithoutUs hashtag might get a bit of a run alongside the #GBDOC tag. Please join me at (UK time) Wednesday at 9pm (which is Thursday at 8am AEDT, because we are the future).

Aims for the chat: don’t use too much Australian slang; limit swearing. I should be right about not using slang…

Spare a Rose wrap up

In case you missed it, the final tally for this year’s Spare a Rose, Save a Child campaign is in!

Thanks to everyone who donated and shared information about the campaign.

The three most important women in my life are forces of nature: My mother, president of union, has instilled in me a desire to do work that helps others. My sister, the fiercest, feistiest, smartest person I know, who constantly challenges me to think outside my comfort zone. And my daughter – my amazing, miracle kid, (and kids like her) – is why I feel that the world is actually going to be okay.

The supporting cast of close family – mother-in-law who just happens to be an Australian aviation pioneer, my sister-in-law, aunts, cousins – and friends means that I am constantly surrounded by brilliant women doing brilliant things. I am astounded, daily, at the challenges they overcome, their triumphs, the lives they change, the impact they are making.

And in my diabetes life it is women – the incredible women – who keep me going and keep me motivated. My diabetes healthcare team is made up exclusively of women who truly breathe the whole person-centred care belief system, building me up and then supporting me as I do the best I can with diabetes. The women I have worked with, and continue to work with, in diabetes organisations who champion those who would otherwise be forgotten have become friends, mentors and daily cheerleaders.

It is people like Cherise Shockley, founder of DSMA; Dana Lewis, creator of Open APS; Susan Alberti, philanthropist; Jane Speight, diabetes language forerunner; Taryn Black, Diabetes Australia policy director and champion for having the voice of PWD heard; Riva Greenburg, journalist, changing the way we see people living with diabetes; Annie Astle, advocate and speaker, and the person I am most grateful to have come to know because of diabetes; Monique Hanley, cycling legend; Christel Marchand Aprigliano, advocate leader; Cheryl Steele, CDE extraordinaire and leader in diabetes technology education; Kerri Sparling, author, blogger and incredible advocate; Anna Norton, Sarah Mart and Karen Graffeo, the women behind Diabetes Sisters; Melissa Lee, incredible communicator, singer, former leader of DHF and now at Bigfoot Biomedical; Kelly Close, founder of diaTribe and Close Concerns; Georgie Peters, speaker, blogger, diabetes and eating disorders advocate…

And you know what? I haven’t even scratched the surface. The diabetes world is shaped by women, built by women, sustained by women. Advocacy efforts are often the brainchild and then led through the blood sweat and tears of women. And how lucky the world is!

 

I celebrate these women today and every day!

More writing about women and diabetes, and women’s health.

Hear Me Roar

This is what Diabetes Privilege Looks Like

The F Word

One Foot in Front of the Other

My Fantastic Frankie

A New Diabetes Superhero

The Sex Talk

Pink Elephants

The D Girls

Healthy Babies

 

 

I wrote the post below back in 2016 (original version here). The Lancet had just published a piece about the differences in insulin access around the globe and I was once again astounded and pained by just how difficult it is for some people. 

I wanted to share it again because with the #SpareARose campaign finishing tomorrow, I thought that a reminder of just how dire the situation is for people born with diabetes in some countries was timely – especially for those of you who have been meaning to make a donation to Life for a Child, but just haven’t managed to yet. 

Can you imagine if it was you or your child diagnosed, and that instead of heading to hospital for treatment, and then home again equipped with all the drugs and supplies you needed to manage diabetes, you had been handed nothing but a death sentence? To be honest, I can’t imagine that, because my situation – as with most people reading this blog – was not that. 

Please take a moment to make a donation. It takes USD$5 to provide insulin to a child for a month. (And I promise, this is the last time I’ll be writing about this. At least, for now!)

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The life expectancy for a child diagnosed with diabetes in sub-Sahara Africa is as low as one year. That’s right: one year.

This is a fact for 2018, almost 97 years after the discovery of insulin.

And it is just not good enough.

In The Lancet, this piece was published about the challenges of accessing insulin around the globe. Why is this drug still so unattainable to so many? Why has access to insulin not had a high priority within agencies such as the UN and WHO?

Why are children and adults still dying when there is a medication available?

I am so angry and sad and desperate that this is the situation and while I am pleased that we are starting to increase the conversation about the unfairness of it, it’s just not enough.

Where is the outrage here? We get angry and feel vilified when someone doesn’t understand the difference between type 1 and type 2 diabetes, or because some celebrity dared to say something stupid about diabetes, and we retreat online and complain and bitch and moan. We say that we feel stigmatised and isolated and misunderstood.

And it’s true. Diabetes is stigmatising and isolating. People don’t understand the details. It’s downright, bloody unfair.

But we are not going to die because we can’t get our hands on a bottle of insulin. Perhaps we need to channel some of our oh-so-easy-to-access outrage and frustration towards an issue that can actually save some lives.

A diagnosis of type 1 diabetes in some countries is a death sentence, plain and simple. And a quick one at that.

And this isn’t okay.

Click image to donate

Have you been thinking about making a donation to Spare a Rose; Save a Child, but just haven’t managed to do it yet? Did you think that because Valentine’s Day is over that it’s too late? Watch this and find out why your donation is still greatly needed.

Donate now to have your donation added to the 2018 Spare a Rose tally. Just click on the image below.

Here I am speaking too fast, hands waving erratically (#TooMuchCoffee), with an idea about how we can get Spare a Rose, Save a Child better known outside the diabetes community…

 

Click image to donate

 

 

 

 

 

It’s that time again. Supermarkets are covered in red heart-shaped foil balloons, fluffy heart-shaped pillows and velvet heart-shaped boxes of chocolates. Florists are about to hike up the price of roses by three or four hundred percent. And the sex shop in my neighbourhood has an odd display of edible underwear in the front window, surely begging the question: who the hell actually thinks that is a good idea as a gift for any occasion? Anyway, I digress..

It must be Valentine’s Day.

We don’t do Valentine’s Day in our place. It is a Hallmark occasion if ever there was one and quite frankly, the idea of being loving and affectionate and amorous one day a year is ridiculous and would leave me feeling very short-changed.

But despite my complete and utter aversion to organised romance, I have, for the last few years, thrown my weight behind Spare a Rose, Save a Child. And today, with two weeks until Valentine’s Day, it’s time for me to start talking about it again…A reminder of how the whole Spare a Rose thing works:

Instead of giving your Valentine twelve (overpriced) roses, give them 11, saving yourself about AUD$6. Donate that six bucks you’ve saved to Spare a Rose.

All funds raised by Spare a Rose go directly to the Life for a Child program which provides insulin and diabetes supplies for kids in need and your six dollar donation is enough to provide a month’s worth of insulin to a kid who might otherwise not have any.

It’s pretty easy and you don’t need to be good at maths to work out how much to donate to actually make a difference.

Of course you can give more – you can forgo the flower thing altogether, donating the cost of the whole dozen (meaning you’ve just provided a full year’s worth of insulin for a child). Aaron knows my favourite sort of vase on Valentine’s Day is an empty one, with the cost of the whole bunch going to Spare a Rose.

You know, here in Australia it the most it will cost to buy insulin is $39.50. If you have a healthcare card it’s $6.40. We really are so fortunate that the vast majority of Aussies don’t have to worry about insulin prices increasing at terrifying rates or insulin not actually getting into the country. I don’t for a moment think our healthcare system is perfect.

But it is a far cry from places where children and adults are dying because they cannot access insulin. That is the reality for a lot of people, and we can do something about it.

Six dollars. That’s all it takes. And it is as easy as clicking here. Please donate.

DISCLOSURE

Spare a Rose Save a Child is an initiative of a few well known advocates from the DOC in the US. In the last couple of years, they’ve invited me and advocates from the UK to be involve in the campaign. (Obviously, I receive no funding to work on this, and am doing it because I believe in it.)

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