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Mal de Debarquement Syndrome Patient Story (Anonymous)

On Crowd.Science we are currently raising funds for research into Mal de Debarquement Sundrome (MddS) through this campaign. Read on to learn more about patient stories, this is the first of two stories that we will be publishing in our blog.

Before 2017 I had never heard of Mal de Debarquement Syndrome. I still wish I never had a reason to know what it is. But on January 6, 2017 my experience with having it began. I was 30 years old. A few days after a New Years holiday to British Colmbia with extended family, which involved flights from the East Coast of the US to the West Coast of Canada, long, winding drives through the mountains, and a snowmobiling outing, I was suddenly struck by a strong rocking sensation that would not go away. It also happened to be the first day of my menstrual cycle when it came on. After trips to my primary care doctor, it was determined that I had a very mild case of the Shingles on my scalp, and this was likely due to that and would pass within a few days to a week. 

Fast forward to April, after having seen several different doctors – my primary care and two ENTs – and trying several different tests/therapies – multiple physical therapy sessions, a round of steroids, an MRI and a hearing test, acupuncture, massage – I finally saw an otoneurologist who specialized in dizziness and told me that he suspected I had MdDS. He felt it was caused by a combination of the shingles virus, snowmobiling, and potentially hormonal changes at the time of onset. Up until my diagnosis I was scared and frustrated at having no answers about what was happening, but once I was diagnosed, I was even more scared and frustrated as I tried to understand what this meant and what the prognosis looked like. The information from my doctor was very vague – I didn’t feel like there was an answer to anything I asked. This led me to searching on Google where I encountered very bleak stories that only made me fear the worst – that this would ruin my life and may never go away. What was initially a physical battle with the symptoms quickly became the hardest emotional battle of my life, and took a major toll on my mental health as anxiety and depression set in.

My husband and I had wanted to start trying to have a family as soon as we returned from our trip but put that on hold because of MdDS – now I wondered, would I be able to care for a child? Would I feel this miserable for the rest of my life? What would this mean for my future? What if I could no longer work? I also worried about if this went away, would it come back and what could I do to help avoid it coming back? What sorts of things should I avoid? What would retrigger it? I analyzed every scenario and drove myself crazy wondering. For the next several months, as I struggled through the day to day symptoms, I was drowning in the “what ifs” – not having information about why this was happening and what to do to manage it was isolating and terrifying. How come so many doctors didn’t know about it? Why wasn’t there more information-sharing in the medical community about this? What was going to happen to me? I wanted to have hope, and I wanted to search for concrete information, but I didn’t know how or where – it didn’t seem to exist, and I didn’t want to keep going down the rabbit hole of stories on the internet – there weren’t many hopeful ones. It was also very hard to explain to people since it is a largely unknown, invisible disease.

Eventually I sought the help of a therapist to help me manage the mental health aspect of dealing with this as that had become my biggest problem. Though somewhat torturous, I was managing the symptoms on a day to day basis. I continued to work and socialize but I needed to learn how to cope with the unknowns of having MdDS. The extremely strong symptoms of rocking and gravitational pull from the first few months had lessened and were much more bearable with time. However, it severely impacted a lot of the things I loved – I could no longer do stationary cycling classes or boating, running on a treadmill, and I worried a lot about air travel – I could handle giving the first two up, but what about flying? How much of a risk was this? 

Living near New York, I sought the help of Dr. Sergei Yakushin and Dr. Mingjia Dai who were working on a treatment at Mt. Sinai. I took a medical leave from work in order to do the treatment. At the time my symptoms were very low, but what was most helpful was getting some information and reassurance from them. There were no guarantees of what the future looked like for me, but they provided me with a lot of hope and the feeling of talking with someone who actually KNEW a lot about MdDS was such a relief.

Over the course of the next year and a half, my symptoms remained mostly low, coming and going until they eventually faded away. I gave birth to a beautiful daughter in November 2018 and am expecting my second child in September 2020. I am so thankful to have MdDS behind me, but I am still haunted by the unknowns of it, if it will ever come back, and what I can do to prevent a relapse. I don’t know Vivi but I am so grateful to her and the other researchers that are working to demystify this troubling illness and help us find answers, treatments and hopefully a cure. If only I had the means to fund their whole study! I always say that if I were to win the lottery, it is the first thing I would spend my money on – that’s how much it means to me. MdDS has forever changed me and I will continue to support research through donations and advocacy in order to bring awareness to this rare disease and to support these folks as they help us in our fight for answers. 

MdDS sufferer – Preferred to be anonymous

If this story resonates with you and you would like to help, please support MdDS research through our Crowd.Science campaign

Why crowdfunding is a good option for my research

About the author: Eloise specialises in utilising immunohistochemical, genotyping techniques and statistics to identify associative risks for Alzheimer’s disease neuropathology from a large population-based brain cohort. Eloise crowdfunded her research on Crowd.Science

Product vs Knowledge

Last month I attended a seminar for researchers in Finland to find new sources of funding. One thing that struck me as worrying is that the majority of the options heavily suggested you should have a product, or a service to offer, as a means to an end for justifying your research goal. Now I didn’t become a scientist to make money, or for fame and glory, I did it because it’s something I love, and I have a passion for trying to understand how life works around us.

To attend a Researchers seminar and be told that we need to offer a service or product as part of our initial goal in research is a bit bonkers in my opinion! I mean, I would love to one day be able to cure Alzheimer’s disease, but in reality I’d just be happy to be part of the bigger picture that leads to understanding the disease. Given these options, I was a bit disillusioned about my future funding prospects, and have spent many moments over the past year thinking about changing my methods in acquiring funding.

Grant Writing Takes Time

As I’ve already mentioned, grant writing takes up a lot of time. Funding agencies tend to give out a few pots of really big amounts, which has left a rather skewed system for the average researcher. Not only do you have to know exactly how to sum up your research in a precise way specific for a given funding organisation, you have to think about things like are your collaborators impressive enough, what techniques do you use, are they modern enough? Is your boss high enough in the field that you will get support no matter what crap you write? Your research may very well be an important stepping stone in its field, but if you can’t tick all these additional target boxes, you may as well forget about your career/research. And without feedback, you can’t possibly know where it is you’re going wrong. I published two papers last year – one as a first author, which usually means you did most of the work, and one as last author, which generally suggests you were the main director of the research. I got no funding from that. Let me just clarify, writing papers is a lot of work! Now of course there are issues of impact factor and article metrics (which I’ll need another blog post to discuss in detail), but wouldn’t it be more logical to reduce the amounts given to researchers, and share it between more individuals?

Research doesn’t have to be expensive

Some research is expensive, but most of what I currently do is manageable on just my monthly salary or funding. I believe it could be much more logical to provide standard salaries to researchers, shared across more researchers, and a larger separate pot for funding the expensive reagents and services that some research requires. Don’t get me wrong, spending so much time on an application, it would be nice to get a big payout, but I think it’s the wrong way to go about it and the poor success rate of funding applications really highlights that changes need to be made.

Modest amounts frequently is enough

These problems are in part why I chose to try crowdfunding my research. I don’t need much, I just want to do what I love and enjoy. This is part of my re-thinking how to fund my research. Smaller amounts, more frequently. Of course this has to depend on your success rate, for which crowdfunding can become very personal.

The emotional side of a disease like Alzheimer’s is therefore a beneficial element when it comes to people understanding the implications of what you do. Writing all these (approximately 20 a year) applications and not having any feedback or success is enough to make anyone want to give up their career in science. But convincing the general public that my research is necessary, that was something I was willing to try.

I’ve discussed in a previous post about how much work running a crowdfunding campaign actually is, but it is also a lot of fun, and as an added bonus, it was a lot more successful than the majority of my grant applications have been!

5 Tips For Your Crowdfunding Campaign Page


If you’re crowdfunding for your research, you’re likely sick and tired of trying to convince people why your work is deserving of money. But creating a good campaign page needn’t be as laborious or tedious as grant applications; in fact, you might even enjoy writing it because it gets you to consider your research from a new perspective. And it’s your space, so use it as an opportunity to really showcase what you’re doing and sell it to the public.

Your work is exciting, you know that, but how are you going to convince others to think the same way? We’ve come up with some tips to help you with this important part of your campaign, so that hopefully your crowdfunding venture is as successful as it deserves to be! We’ve also written various other articles to help you on your way to success, so make sure to check out the “crowdfunding tips” section of our blog!

1: Tell A Story

This may seem fairly basic, but structuring your page logically will make the text flow better so that it’s easier to read and understand. If you lose people at the start by not introducing the project properly and giving it some context, then you’ll struggle to get people interested.

The “beginning” part of your story should offer some background – what’s the current situation, what are the issues within the field? You have only about 10 seconds to hook readers, so make your first few sentences impactful; don’t waffle, just get straight to the point.

In the “middle,” you need to introduce the solution, i.e. your research. What are you hoping to achieve, what can you bring to the table, and why is your work important? Try and bring in the reader here by thinking of ways, whether direct or indirect, that this work could ultimately affect them, or the world they live in.

Finally, at the end, you need to say what you need and why. How much are you asking for, and where exactly is that going? Try not to be too vague here and just say “we need £X for this project,” as people will want to know that their money is being well-spent. It would also be good to touch on the struggles of getting funding for research, so people understand the need for crowdfunding.

2: Show People Who You Are

After you’re done introducing the project, it’s important that you include a section on you and your team. We want to make sure you get the recognition you deserve and boost your network, so this is a really good way to break down the barriers between you/science, and the public.

If the campaign is faceless, it’s more difficult for people to share your passion. So show them that you’re more than just a stereotypical scientist, and are a likeable person. More importantly, explain what drives you to do your research and what makes you qualified to do it; tell people about your background and experience, and how that’ll make the project successful.

3: Ditch The Jargon

You want to appeal to as many people as possible, and the majority of the public aren’t experts in science. So don’t fill the text with complicated and off-putting science words; strip it back to its bare bones and only explain what you need to to get your point across. It’s not a grant application, so people don’t need to know the ins and outs of different scientific techniques, etc!

4: Remember Your Audience

Keep your audience at the forefront of your mind while drafting your campaign page. Think about who you’re addressing: are you aiming your campaign towards the general public, or perhaps a certain group of people, say environmentalists, parents, young people, etc. This will dictate the language and tone that you use. Put yourself in your readers’ shoes: what would they want to hear? For instance, if you’re crowdfunding for medical research, you could maybe include some words from someone affected by a particular health condition to help put the study into context.

5: Break Up The Text

A simple one, but important nonetheless. Confronting readers with big blocks of text is off-putting because it immediately puts them in the mindset that the read requires a lot of effort and concentration. People are often busy, so make your page less of a task by breaking up the text in two ways: using images and catchy subheadings.

With regards to the former, eye-catching images can help bring a sterile-looking page to life, keep the reader interested and help your audience understand what you’re talking about. Developing a new piece of tech? Show people the progress you’ve made! Taken some awesome microscope pictures? Include them!

There’s no real secret when it comes to the latter, but don’t overlook their importance as a way to maintain reader interest. Keep them short, snappy, and don’t include any jargon.

We hope you’ve found these tips helpful and use them to your advantage. It may seem like there’s a lot to consider, but just remember why you’re doing this, and your passion should effuse.

Good luck!

10 Tips For Creating A Science Crowdfunding Campaign

Eva Rinaldi/Flickr. CC BY-SA 2.0

Eva Rinaldi/Flickr. CC BY-SA 2.0

Money’s not always easy to come by, whether that’s for a home, holiday, general life, or scientific research. But hopefully by now you’ve realised that Walacea – the UK’s first science crowdfunding platform – can help you with the latter.

It would be great if you could just launch your campaign page, sit back, relax, and watch the donations pour in. Realistically, though, you need to put some thought and effort into your campaign to make it the success that it has the potential to be. We want your project to come to life as much as you, so we’ve created this handy tip page to help you on your way and make your crowdfunding experience a positive one.

1: Remember Your Audience

One of the biggest mistakes you could make is forgetting who you’re pitching to. Yes, it’s scientific research, but you’re not trying to get a grant from a research council; you’re reaching out to the wider public. You want to get them interested, so don’t put people off by using complex language in your campaign page or posts on social media. If you can’t make people understand what you want to achieve, and why it’s important, then they won’t back it.

Strip your research down to its bare bones, cut out the jargon, and be engaging and enthusiastic. If you don’t come across as excited about your work, then your audience will struggle to be excited with you.

2: Think About Your Network

The public are a huge part of crowdfunding, but don’t forget about the people you already have at your fingertips: your academic network. Fellow academics and researchers will understand the woes of trying to secure research grants, and those working in the field will want to see progression, so you will likely find that this is a good place to gain support. Start putting the word out and see whether the communications department would consider featuring your project in a newsletter or perhaps on the institution’s website.

If you get some negative feedback from academics – don’t worry. Crowdfunding is a relatively new thing, so those who are more set in traditional ways may not like the idea. At the end of the day, you’re doing what you can to bring research that you think is important to fruition, and that’s a good thing.

3: Become Active On Social Media

Don’t shy away from social media: it’s billions of people connected around the world, so make the most of this opportunity. We’ve already discussed the importance of social media in an earlier post, and created handy guides to help you get started, so make sure you read those. But at a glance: Facebook, Twitter, LinkedIn and Reddit are great ways for you to reach people and spread the word.

These platforms help things go viral, so start setting up accounts, following interesting and relevant people (journalists, fellow scientists, entrepreneurs etc), and thinking about how best to address your new audience. And keep up with it! If you don’t already have a big following on social media, you need some determination – followers won’t just flock in after a couple of posts; you need to be regularly interacting with people.

4: Create Shareable Content

Engagement is essential when it comes to science, and crowdfunding is no exception. One way you can do this is by creating content that people will want to share with their friends and followers. And now you have hopefully got on board with (at least the idea of) social media, the most basic thing you could do is post on a regular basis on these networks. Keep up with the news and link your research to that, and keep people updated on progress and challenges.

Something we also actively encourage you to do is to make at least one video, starting with one for your campaign page. Digital media is becoming increasingly popular, so you need to keep up with the trend and give people what they want. Maybe you can make fun videos about your work, showing people cool machines or specimens, or detailing some of your experimental disasters! That’s a great way to get people liking both you, and your project.

5: Reach Out To People

Social media is a great way to start engaging with people, but don’t be afraid to send out a few personal emails, too. For instance, it’s worth getting in touch with your institution’s communications officers because they might write a press release for you and send that out to their mailing lists, which would reach a large number of media professionals.

You may also want to look up some science bloggers who have large followings, and pitch your project to them. Flattery will get you far, of course, so tell them how great and interesting their blog is, and explain why you think your research would be appealing to their audience.

6: Encourage Discussion

Discussions and debates not only get people thinking, but they also help promote understanding, both of which are good outcomes for science. A great way to start an online discussion is to use Reddit’s Ask Me Anything. This is where a user will offer up their brains and expertise on a particular subject, in this case you and your research project, and other users can come along and ask questions.

It’s all public, so don’t put people down for asking “silly” questions, or get defensive towards people who may be less enthusiastic. Thank them for their interest and be as honest and open as you can; transparency breeds trust.

7: Aim For A Realistic Funding Goal

When thinking about your campaign, it’s tempting to just ask for the maximum amount needed to carry out your project and hope for the best. But we have actually found that smaller projects tend to be more successful, with the exception of those that have the potential to go viral because of their interest to the public.

If you ask for an unrealistic sum of money, people might be discouraged from donating because they think that the project won’t reach its target. Conversely, if it looks achievable, people will be more likely to dip into their pockets. So think about the minimum you need, because a project that successfully raises a goal of £2,000 looks a lot better than a project that raised only £2,000 of a £10,000 goal, even though the money is the same!

8: Think About Stretch Goals

A great way to keep the money flowing in after you’ve reached your goal is to propose stretch targets, or projects that you could do if you hit another funding milestone. This is also a brilliant way to promote engagement, because if you have a few different options, you could put these out to the public and find out which ones they’re most interested in. This helps donors feel like they’re really part of the research, rather than just a piggy bank.

9: Carefully Consider Your Rewards

Some people are happy to donate to a cause they believe in without getting anything in return, while others might want some bang for their buck. Think about what might appeal to you or your friends if you were donating to a campaign. For instance, for smaller donations, can you send out cool pictures that people could frame? At the other end of the spectrum, can you think of something really enticing and unique? Get personal here and make people feel special. Maybe a field trip to your research camp, or dinner with you and your colleagues.

10: One Last Simple Thing…

If we’ve left you feeling a bit overwhelmed with ideas, here’s an easy one that will take you all of 30 seconds: include your campaign page in your email signature! You probably send a huge number of emails each day, so this is a really simple way to alert people to your project.

Good luck!

Handy Guide: Using LinkedIn and Reddit to Promote Your Crowdfunding Campaign


Like Facebook and Twitter, LinkedIn is a social network, but it has a key difference: it’s aimed at business professionals, rather than anyone and everyone. But that doesn’t mean it’s not a good place to promote your project, because it gives you the opportunity to network professionally with other researchers and potential backers/philanthropists who may be interested in pledging, or are involved in similar causes and thus may share your campaign.

So start building your network by creating a personal page and inviting people to connect with you, whether that be colleagues, fellow researchers working in similar or related fields, or media professionals who may be interested in promoting the project. The same rules for the other platform apply: post frequently but don’t spam, and make your posts easy to understand. Make sure to include links to your crowdfunding page and your research so that people can engage with you, and keep your eye out on the news for potential connections with your research that you can use as an excuse to shamelessly promote your own.

Ask Me Anything

While Reddit may have hundreds of millions of users, don’t feel out of the loop if you’ve not heard of it. It’s geared towards news and entertainment, rather than general social networking, but it has a hugely popular science community and an engaging section, or “subreddit” called Ask Me Anything (AMA). This is where a user opens up a particular subject or topic for discussion, inviting other users to ask questions by commenting on the post, which the host then answers. Think of it as like a press conference, but completely online.

AMAs are a really great way to encourage engagement with your research, and for you to engage with the public. Remember, they’re the ones who you want to win over and get behind your project, so be open, honest, and appreciate their interest. Stephen Hawking did an AMA last year (the third-largest in the site’s history), and although you’ll probably never be that popular, it’s demonstrably a great way to get people talking and join those with common interests and goals.

While Reddit may not be the most user-friendly of the networks, they have posted a handy guide on AMAs, and we’re more than happy to help get you going if you choose to crowdfund with us.

Good luck!

P.S., check out our other helpful pages on using Twitter and Facebook.

Handy Guide: Using Twitter to Promote your Crowdfunding Campaign

Esther Vargas/Flickr. CC BY-SA 2.0

Esther Vargas/Flickr. CC BY-SA 2.0

Like Facebook, Twitter reaches a massive amount of people, with users numbering in the hundreds of millions. A huge difference between the two is that the latter restricts your posts to just 140 characters, so there’s no room for essays on here! That means your posts have to be snappy and grabbing, so make the most of your word limit.

Twitter is all about what’s trending; what’s going on in the news and the world, and what’s popular right now. This is all based on what people are talking, or “tweeting” about. If a particular word or phrase is used a lot, then it’ll go up in popularity and start trending. This is helped by the hashtag function; basically, just shove the “#” symbol in front of a word, or string of words, such as #science, #crowdfunding, #research etc. This allows you to find other people who are also talking about that particular topic, and people who share interests to find you.

Twitter is actually a great hub for scientists and enthusiasts alike, so you’ll easily be able to find people talking about the subject who you might want to follow and tweet your project to. If they like it, they may share it with their followers, which could help it snowball in popularity. Look for scientists, journalists or potential backers who are active users and have a decent number of followers, and start interacting with them. Don’t pester them, but engage in discussion and be positive. If you’re interacting with researchers, feel free to use science speak, but if you’re aiming your tweets at a broader audience, cut out the jargon completely to make your project as accessible and appealing as possible.

Something to think about is also the timing of your tweets. Try to think about when people are most likely to see them – before work, at lunch time, after work and throughout the evening. Studies have shown that the best times at Tweet are around noon, 5-6 p.m. and around 9 p.m., but bear in mind where your audience is based because of timezones. Of course, you might not want to be glued to your phone all the time, and if you’re reaching out to audiences in different timezones, then you don’t exactly want to be losing sleep for the sake of tweeting. But there is a handy tool called Buffer which allows you to schedule your tweets, and best of all, it’s completely free!

Another great function of Twitter is their lists, which are curated groups of Twitter accounts. You can create your own, or join others. Sometimes, people will also add you to lists that they think you’re suited to, such as researchers working in a particular subject area. We’d encourage you to look out for groups that are relevant to your research and your audience, and begin engaging with members, as it’s a great way to reach more people and get them interested in what you’re doing.

Good luck!

Remember to keep a look out for our other pages on using Facebook, LinkedIn and Reddit.

Handy Guide: Using Facebook to Promote your Crowdfunding Campaign

Facebook picture

With well over a billion users, Facebook offers you a huge potential audience, and it’s simple to use. If you don’t already have an account, they’re really straightforward to set up. From here, you might want to create a page for your research that you can begin sharing. Don’t go too heavy with information; it’ll put people off. Give people a bit of background about your research and your goals in the about section, and direct them to your institution page for more of the nitty gritty science details. Remember that the majority of the public aren’t science experts, so bombarding people with technical information isn’t going to win them over.

Now you have your page up and running: use it! Ask friends to “Like” it and share it with their friends, while also looking for other science communities on Facebook and posting it there for other science enthusiasts to see and hopefully become interested in. There’s certainly no shortage of science pages, so start interacting in the comments sections, particularly if you see posts that relate to your work.

It’s really important that you strike a balance between spamming Facebook users, and letting the page stagnate. If you post on your page too frequently, people may get irritated and unfollow you. That said, if you don’t post at all, you won’t get people interested. Ideally, you don’t want more than a few posts a day, and they shouldn’t all be the same. Think about posting fun or hard-hitting facts that relate to your project, updates on progress, and links to any media coverage you’ve received. Encourage discussion, don’t ignore comments and don’t get angry at people who don’t share the same opinion as you.

Good luck!

Remember to keep a look out for our other pages on using Twitter, LinkedIn and Reddit.

Why Social Media Is Key To A Successful Crowdfunding Project


Image credit: Computer problems/Flickr. CC BY-SA 2.0

So you’re thinking about crowdfunding, or have just launched a campaign. Great! But what next? In an ideal world, you could sit back and watch the pennies flowing in after pushing “go,” but to have the best chances of success, you need to shout out to the world about your project and reach as many people as you can. The best way to do that is through social media and, while not an effortless endeavour, it doesn’t require much of your time, and it’s easy to get to grips with.

If you’re new to social media, or find the idea completely daunting; don’t worry. This series of posts will help you get started and give you the tips you need to get your voice heard.

Why Bother With Social Media?

Platforms such as Facebook, Twitter and LinkedIn connect not millions, but billions of people across the globe. According to a report from We Are Social, last year there were more than two billion social media users worldwide, with the number of active accounts representing almost 30% of the global population. That’s a huge, accessible network at your fingertips, so don’t take it for granted: tap into it.

Before you dismiss social media as merely a vessel for people to share photos of their dogs and gossip about celebrities, it also has a huge place in the professional world, helping businesses boost their presence, promote products, monitor and evaluate progress, and engage with target audiences. Companies recognise this and many will have their own social media managers and strategists as a result.

Crowdfunding is no different: social media helps raise awareness of both the issue and the solution (your research), connects likeminded people, and gets the public engaged and learning about science. All of those mean more visibility for your research and, as a result, better chances of reaching your fundraising goal.

If your project has the potential to “go viral,” don’t expect journalists to do all the leg work for you: their primary interests tend to lie within the research itself, not how it is being funded, so good publicity in the media doesn’t necessarily mean more pledges. If you skimmed a newspaper article on the go which mentioned how to donate to a project, would you go to the effort of looking it up yourself? This is another reason that a presence in social media is essential.

Getting Started

There are a huge number of social media sites, so you need to choose the one, or ones, which are best for you and will help get you the exposure you need. They all work in different ways but, ultimately, they have common goals. That said, the audiences do differ slightly, so you’ll want to take this into consideration when you’re thinking about who you’re pitching your project to.

The three main players are Facebook, Twitter and LinkedIn, with Pinterest, Google+ and Tumblr close behind in terms of users, but we’re going to focus on the first three, and introduce you to Reddit’s Ask Me Anything. So make sure you follow our blog page for these! If you have any ideas from personal experience that you’d like to share so specific questions, we’d love to hear from you! So feel free to post suggestions/questions below in the comments section. 

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