Monthly Archives: May 2015

Mel’s crowd funding wheezes have jumped the shark…

This is my first (and perhaps last) post related to my third crowd funding campaign, that I have attempted in as many years.

In that time, I have been nationally and internationally feted, as a guru on the topic of crowd funding research, as an academic. Which was nice….validating as it were, in this day and age, when the catch cry of ‘excellence with impact’ in academia – is paramount.

But with some trepidation (given my current health status and the on going mental health impacts of such, documented in several posts here since the start of 2015) I decided to attempt to crowd fund a project I had been working on since 2012, that was the most promising from a ‘bench to bedside’ patient outcome and traditional peer reviewed perspective.

However, the disease in question, which could kill people with a toxic bacterial diarrhoea…had a distinct image problem, as it was decidedly non glamorous, from a marketing angle (and I say this from the perspective of a scientist that had ‘sold’ the value of medical maggots to the masses!)

I had previously discarded this disease as ‘impossible to sell’ via crowd funding, due to the general narrative of philanthropy for killer diseases and the hierarchy of ‘significance’ that exists with in this space. (If I had $10 for every time I wished I had stayed working in cancer research, I wouldn’t need to crowd fund!)

Perhaps it was the brain lesion talking, but I honestly thought that all that a disease that kills people with toxic mega colons (but mostly just gives people the shits) needed was the ‘Mel treatment’ of awareness raising and crowd funding.

And this with with the over arching aim of having an interesting and compelling narrative to tell, as an invited speaker to the Cdiff Foundation Awareness conference, in Boston in Nov 2015. I thought that I could detail the process of attempting to crowd fund and then hopefully present them with a new resource, with up to date info (such as, it’s not just a nasty hospital super bug….it can be acquired in the community and perhaps from pets and contaminated meat).

To create this resource, I would need to engage a professional animator, the fabulous James Hutson, from Bridge 8, who I had worked with before on my previous Hips for Hipsters campaign – who I knew to be exactly the person to create a witty resource that could hold mass appeal, on such a taboo topic. But I want to pay him properly for his intellectual property and his time on this occasion, which means I need to raise over $10k via my current campaign.

It was a risk, asking for funds for an awareness resource, instead of directly for my research…as my existing successful CF paradigm was to exploit the ‘Woe is me, the EMCR with no proper grants’ ….as feeling often shared by my peers and people of certain political persuasions on Social Media.

But, as I had been communicating to all and sundry, the concept of ‘engagement’ and ‘awareness’ as the best ‘outcome’ and ‘impact’ of academic CF campaigns, I thought I would just cut to the chase…and fund the actual awareness raising resource. But if the levels of bemused interactions with peers and some unsolicited advice (from those who have no track record of doing anything like this)…is anything to go by…I’ve made a huge mistake.

And my moment, when I strapped on the water skis and jumped the shark, Fonzi style? The moment when I uploaded a #undiesforcdiff selfie yesterday, in a vain attempt to garner any interest in a gimmick related to this project. It got me a couple of nice donations, but has left me pondering the last shreds of my professional reputation.

Certain events, beyond my control, involving mistakes made by the ‘powers that be’, with some of my most staunch previous supporters, leading up to the launch of the No more Poo Taboo campaign, left me wondering if I should pull the plug, less that a week out. I had 45 days, but needed 2-3 weeks of clear air time, to allow the generated toxic aerosols to settle (a habit picked up when working on liquid cultures of PC3 level clinical strains, during my PhD)

This strategy has left my woefully short on dedicated communication time, to clarify the goals of my project this time. I now often wished I had the bravery to press the ’emergency stop’ button, a few weeks back.

The only consolation I have is that when looking at the overall stats for success versus failure, on crowd funding campaigns, I’m currently ‘on trend’ heading for a 2/3 success to failure rate. And as a scientist, I need an internal negative control…(she tells herself forlornly!)

But, perhaps I can get an ‘ice bucket challenge’ viral campaign going, if I could get a celeb to represent this issue, like Carrie Bickmore did for a recent awareness campaign for brain cancer, in Australia. But I’m thinking we come back to my original issue…Poo is too Taboo for anyone to be associated with.

I would like to thank @greenepidemic (Dane) for the #undiesforcdiff hashtag idea and @ivalaine (Miranda) for the ‘nominate friends to do undies selfies, a la ice bucket challenge’ idea. And to all of the early adopters of my campaign, fingers crossed I won’t be giving your money back!

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Epic SciComm Fail, Mummy!

Dear Kids,

I am writing this missive to you, as I sit listening to your innocent games. It’s been a tough few months for our family, after I temporarily lost my sight at the end of last year and we found out sometime later it was due to an active lesion in Mummy’s brain, caused by MS.

I remember seeing the lesion on the CD of images, on that fateful day, as I sat by the Christmas tree. It was so large, I didn’t need a degree in medical imaging to understand that this couldn’t be normal or likely to be explained away as an artefact of the MRI process. As I zoomed in and out of the sliced brain images, I felt a dawning horror, but also a morbid fascination for the incredible technology behind the images.

I remember showing you both the images a few days later, when the initial shock had worn off and only the ‘Wow, that’s cool!’ wonderment remained. The contrast agent spilled out of the lesion like overturned milk, a bright white stain on the left side of my brain. I showed you the images as I wanted to explain what was happening to me, as a science communication exercise. My mantra of ‘you’re never too young to learn some science’ back fired spectacularly when I experienced your reactions to the abstract pictures.

Yes, I was able to now provide empirical evidence, to you, DS7, for my previous claims of being ‘Queen of the Zombies’ (a family meme I developed to ameliorate your fear of the bogey man and the dark) and you seemed mollified. What I wasn’t expecting from you, DD3, was the visceral reaction to the images. I considered you too young to see the images as anything more than abstract. But you reacted immediately with fear and loathing and proclaimed ‘Mummy, I’m scared of your brain! I don’t want a brain!’

Instantly, I knew I had made a science communicator’s biggest mistake, I had woefully misjudged you, my audience. I started damage limitation, by trawling the internet, to find a cutesy cartoon of the brain doing all the important work that keeps our bodies functioning, to show you. You, DD3, could not be pacified and I ended up having to take you to sit on my knee, whilst they infused IV corticosteroids ‘to fix Mummy’s brain’ at the hospital. I asked the poor Neurology Registrar to pick up the communication baton and explain to you that the brain was important. She struggled, as I had, under your uncompromising gaze.

Over the New year’s break, my sight came back, my right pupil returned to its normal size and my ‘Roid rage’ retreated. Many strangers (who I had made friends with, online) visited our home, to offer their support. You both seemed to adjust quickly to the new Mummy. But it breaks my heart to have you, DD3, role play everyday activities with me, that I’m often too exhausted to do now, in real life – like walking to the park and playing on the swings.

You both have now made career decisions based on my condition. You, DS7, have decided that cone shell venom could cure my MS (after watching an episode of Octonauts) – and hence want to be a research scientist, perhaps to work in my friend Charles’s Lab. You, DD3, have eschewed my dedicated grooming to become an Engineer and now want to become a medical Doctor.

How do I feel about you both wanting to have your futures defined by my illness? Non-plussed, to say the very least. Whilst I try to encourage you to question the world around you and cling to your current inherent wonderment, I want you to do that without the spectre of ‘fixing Mummy’s brain’ looming large in your collective consciousness. I want you to find your own path in this life, unfettered by such a filter. I want to have to same infinite world of possibilities that I had, when I was growing up.

My hope for you both? I just hope that as you grow up and away from your dependence on my care, that you also become somewhat complacent about my disease. I want the mundane minutiae of your self-obsessed teenage years, to replace your current worries for me. But I will support whatever decisions you make, as to your respective futures, for as long as my cognitive abilities hold. When you are much older (even though you, DD3, are eyeing off my diamonds already), we will have to discuss my future and my plans for a controlled and dignified death. I hope you will be well down your life paths by that time.

Love Mummy (aka Queen of the Zombies) Xx

(Image from ZomTeez )

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