Tuesday, 12 April 2016

Make way, make way for Team Princess 2016

We're back!! And ready (as we can be) to take on M.E awareness day 2016 (Thursday May 12th) and build on the amazing achievements of the past two years. Team Princess have raised over £10,000 for M.E charities in the UK and Australia through our The Princesses and M.E events. That has gone towards funding biomedical research, drug trials and all the great services these charities offer to help support sufferers and their families. As well as helped to raise awareness for this much misunderstood illness.

Firstly who are Team Princess and what is The Princesses and M.E event?

Team Princess are a group of M.E sufferers and supporters that become Princesses for the day on M.E awareness day to raise awareness and fundraise for M.E charities. Individually each Princess is admirable, courageous, strong and brave. Even though they might not think so themselves. Facing adversity with optimism. As a group we're a sisterhood (including the men) that want the best for one another. Getting each other through the worst days and cheering for them on their achievements.

The Princesses and M.E event is held on May 12th, where members of Team Princess become Princesses and share photos to social media using the hashtags #teamprincess and #theprincessesandME. All in the name of raising awareness and raising money to help give sufferers support and hope. More details on how you can take part this year are below.

When I first had the idea I wanted to not only fundraise and raise awareness but also celebrate some of the fantastic people that I had got to know that shared a diagnosis and soon became friends. People who left me in awe of their determination, their strength, positivity in the face of adversity and their kindness. They were princesses in my eyes.

But I think the word Princess can conjure up images of diva strops (that's the illness not us), of being delicate, fragile and girly. That they are helpless and in need of rescuing, whisked off into the sunset to live a fairytale life. Yes at times we are helpless and feel no one can offer any genuine help, until rescue comes in the shape of a cure or at least effective treatment that allows us to regain a life we can only dream of. But what I see is far from fragile, helpless and hope-less, I see strong people facing adversity with courage and even humour. They're the kind of people that you want to learn from and get to know more. They're Princesses.

This year we want to ensure that that message doesn't get lost. That people don't just look at the photos and think "oh how pretty you look as a Princess." But see the reasons why you are a Princess and that for all you cope with you more than deserve to be a Princess for a day.

So on Thursday May 12th if you wish to join Team Princess and our The Princesses and M.E event what you need to do is:

1) Get in touch and let us know you'd like to take part. Either comment here, Facebook, Twitter or Instagram. Links to which are at the end of this post.

2) Set up a justgiving or btmydonate if you wish to set up an individual fundraising page. This is not compulsory and because many sufferers are too unwell to set up their own fundraising pages and keep up with them group fundraising pages for a number of charities have already been set up, to make things even easier should you wish to help Team Princess' fundraising campaign. You can simply share the links,(please note not all event pages for btmydonate have been set up yet but will be added as soon as possible). Here are the links (simply click on the page to go to the page):

Justgiving Team Page
Association for Young People with M.E
Action for ME
ME Association
Invest in ME
ME Research UK

BT mydonate
Smile for ME
Hope 4 ME and Fibro Northern Ireland
Tymes Trust

I've included more details about our fundraising campaign below. And a guide on how to set up an individual page is available here http://howtodealwithme.blogspot.com/2016/04/how-to-set-up-individual-fundraising.html

3) On May 12th dress up as a Princess. Dress up as much or as little as you like, or are able too. Over the years we have had full costumes, rewearing of wedding dresses, wearing a gorgeous dress you already have, Kate Middleton fashion inspiration, pyjama princesses or simply wearing a crown/ tiara. And let's not forget our men in their full Princess attire. Remember to put your health first and if you are too unwell to dress up on that date then of course you can choose another date should you wish or prepare your photos in advance. The point is you're a Princess regardless of what you are wearing. It's not a competition. Even if you simply use an app on your phone like snapchat or pic collage to add a crown it will still help make a difference. And any men that wish to take part but don't want to dress up as a Princess then being a Prince is great too.

4) On Thursday May 12th (or another date if you are too unwell) share a photo of yourself as a Princess to social media and use the hashtags #teamprincess and #theprincessesandme Be sure to post to our Facebook page too.

3) Alongside your photos write: "Today is M.E awareness day and to help raise awareness I've joined Team Princess. I'm a Princess because..."

Post about the characteristics you share with well known Princesses. Who if you look beyond the girliness you'll find stories of bravery, courage and fighting for what they believe in. Qualities that show you're strength and even your sense of humour. Here are some examples:

I ride around in a carriage/ noble steed. Also known as my wheelchair.

I'm in search of a fairytale.

 I feel like I could sleep for 100 years.

Just like the Princess and the pea the slightest discomfort means a restless night.

Because I have help to do chores and put on my shoes. Sadly unlike Snow White and Cinderella the animals have not been very cooperative to training.

Like Ariel I can't walk on land and want to be where the people are.

Like Belle you want adventure in the big wide somewhere.

Because I have been locked away from the world but never gave up on hope that one day things will change.

I long for the day a fairy godmother will arrive and tell me there's a cure.

Like Cinders staying out past midnight leaves you worse for wear.

Brainfog means that just like Cinders we're likely to leave things behind.

One of the quotes you try to live by is 'have courage and be kind.'

Because I am brave and face the beast that is M.E each day. And just like Belle as each day passes I am learning to tame the beast and find the beauty that life still has to offer.

Being brave enough to try to change your fate like Merida.

You're a warrior, like Xena or Mulan, but battling against chronic illness.

Like Kate and Diana I champion a cause and campaign for change.

5) End your post with: "Myself and thousands more are desperately hoping for a fairytale, for a magic potion that will help treat and cure this villain of an illness. You can help us achieve that by helping us raise awareness and donating at..."

5) Link to either the teams fundraising pages or your own fundraising page.

And that's all you need to do to be a member of Team Princess. We'll be sure to share your photos across our social media too, to help raise awareness and ensure they reach as wide an audience as possible. If you don't want your photo on a certain social media then please let us know.

Once again this year we want to support the cause as a whole which means supporting and helping as many M.E charities as possible. Here in the UK fundraising pages are set up on justgiving for Action for ME, Invest in ME, ME Association, Association for Young People with ME, reMEmber, ME Research UK and on btmydonate for Smile for ME, Hope 4 ME and Fibro Northern Ireland and Tymes Trust. These will be group pages and be open from April 12th.

 You are also welcome to set up your own fundraising page, should you wish to do so, which can be linked to the overall team page on justgiving so that we can keep track of our overall total. Having your own page will be best if you plan to sell or giveaway items in return for donations. If you plan to do this or hold an auction please let us know in advance as there are rules and regulations that need to be put in place which you will need to be made aware of before setting up your page. Also please note that no online raffles can be held due to licencing laws.

 Princesses that wish to set up their own fundraising pages are free to choose which charity they would like to support. We also ask that you respect individual members of Team Princess' choice of charity if they decide to set up a personal fundraising page and understand that their decision is based on their personal experience with that charity and the way they have helped them to cope with their diagnosis. However by being a member of Team Princess you are also supporting the cause as a whole, promoting unity and wanting to help as many charities that do so much for us.

Princesses in other countries that wish to take part please get in touch and we can look into how we can help charities in your country too. We'd love to reach as many charities as possible to help sufferers worldwide.

We'll also be supporting a lovely organization ran by an M.E sufferer called Spoonie Survival Kits, which sends survival kits to help brighten a sufferer in needs day. Money will be raised for these through auctioning an item for each charity/ organization, which will be held on our Facebook page www.facebook.com/MEprincesses. Dates for this auction are still to be confirmed.

As recently announced Amanda Carroll's beautiful paintings, as seen above, will also be auctioned on our Facebook page on the weekend of 21/22 of May. Amanda wishes to raise money for the ME Association. Full terms and conditions for the auction will be available to view on our Facebook page.

But wait there is even more information and plans! In the spirit of wanting to create a postive atmosphere and celebrate the kind, generous pillars of strength many sufferers are, the ones we see as real princesses who help get us through the worst days, throughout May we're going to be holding giveaways. Where each week you will be able to nominate a friend(s) (that has M.E) that you think is a Princess and share the love by stating the reasons why you think they're such a good friend/ princess. Each nomination will then be entered into a draw to decide the winner.

There will be four giveaways in total; one on our facebook page, one on instagram, one that is eligible for international (outside the UK) entries and one in which we celebrate our wonderful carers who take so much care of us. The first giveaway, which will be on our facebook page, will start on Wednesday April 27th and they'll be drawn every Wednesday. The rules for each giveaway will be clearly stated with each giveaway announcement. It's so exciting to think about making people feel special and to be giving away prizes that will help brighten someones day.

Finally watch out for our promotional posters and please retweet/ repost/ share them to help spread our message and raise as much awareness as possible.

On our social media accounts we'll also be trying to create a positive space. M.E awareness week can be quite tough for sufferers. As much as it's amazing to see M.E being mentioned so much and people using what limited energy they have to help raise awareness, it can also hard to see so many posts on your social media feeds. It can be very in your face, a stark reminder of reality and all the adversity; that life has not gone to plan. Because as sufferers we know full well the suffering and devastation this illness can cause. It's almost like rubbing salt in the wound. As mentioned it's difficult because awareness needs to happen to reach people outside of the community but if you are in that community it can stir up a plethora of emotions. So we want to create a little bit of a sanctuary. A place you can reflect on personal achievements and strengths. How you've learned to keep a smile on your face. And a place to celebrate others achievements and give them the support and kindness they need.

We're very excited about this years campaign and cannot wait to see how much of an impact we can make this year. 

Keep up to date with all things Princess on our social media:
Twitter: @teamprincess4ME
Instagram: @teamprincessofficial

Thank you for reading, and taking the time to learn more about Team Princess.


How to set up an individual fundraising page

As many sufferers are too unwell to set up their own fundraising pages and keep up with them group fundraising pages for a number of charities have already been set up, to make things even easier should you wish to help Team Princess' fundraising campaign. You can simply share the links, which you can find here, (please note not all event pages for btmydonate aren't set up yet but will be as soon as possible:

Justgiving team page
Action for ME
ME Association
Invest in ME
ME Research UK

BT mydonate
Smile for ME event page

However here are the details of how to set up your justgiving and btmydonate page should you wish to set up an individual fundraising page for a charity of your choosing as part of The Princesses and M.E event.


Most the stages can be completed via the mobile version of the website, however to personalise your page, you may want to switch to the full site for ease of use, as pointed out in the steps below. If you are on your mobile simply click use visit full site at the bottom of the home page.

1) Go to www.justgiving.com and click get started. You will then be prompted to log in if you already have a just giving account, or you can create a new account. Alternatively you can sign in via facebook or download the free justgiving app. If you are already logged in click start fundraising.

2) Click the fundraising for a charity option.

3) In the search bar type in the name of the charity you wish to support and press select. Remember you can choose from:

ME Association
Invest in ME
ME Research UK
ReMEmber ME
Action for ME

4) On the next page select the taking part in an organised event option.

5) Even though I've already put in the event it doesn't come up as an option if you search so you need to click add your own.

6) On the next page, where it says tell us about your event, in the it's a... drop down box select other.

7) called... type The Princesses and M.E/ Team Princess.

8) starts on 12th May 2016
     ends on 12th May 2016

9) Choose a web address for your page for example justgiving.com/princesssian

10) Answer yes or no to the questions

If you are planning to make items to be sold in return for donations you will need to answer yes. Or if you are planning to auction anything please let us know in advance as there are rules and regulations and terms and conditions have to be put in place. Please note that online raffles are not allowed due to licencing laws.

11) Check or uncheck the contact options

12) Press create your page.

13) Now your page is created you can personalise it. If you are having problems saving the information using the mobile site, switch to the full site.

14) Add a photo of yourself or you can use the Team Princess logo.

15) Where it says tell us what you are doing write becoming a princess for M.E awareness day... because I want to make a difference.

16)  If you wish to set a fundraising goal amount you can, remember though every penny is great and not to put too much pressure on yourself.

17) Tell your supporters your story. You can copy the following (forewarning copy and paste doesn't seem to work as I found out creating 7 pages!) :

Non sufferers will need to adapt the wording to suit them. Also adapt to make it more personalised should you wish.

As some of you will know I suffer from a chronic illness called M.E a neurological illness that has dramatically changed my life.

This year I am joining Team Princess and taking part in The Princesses and M.E event, a group of M.E patients and supporters that are becoming Princesses on May 12th. In the hope of raising awareness of M.E and fundraise for the charities that do such a great job in supporting patients and those close to them.

Our ultimate fairy tale would be finding a cure for this villain of an illness that has locked us away from the world. Or even a magic potion that was an effective treatment. That would be an absolute dream come true.

You can find out more about Team Princess on our facebook page www.facebook.com/meprincesses

18) Say which charity you have chosen and why?

 19) You can personalise your page even more by adding more photos, videos, updates and even choose a colour scheme for your page.

20) You can also personalise the message that donors receive when they make a donation, thanking them for their generosity.

21) To make it even easier for people to donate you can also set up a text code. Learn more about how to do that here.

22) Link your page to our team page, so we can keep track of our overall total. Our team page is www.justgiving.com/teams/teamprincess2016 Simply visit the page and click on join the team.

BT mydonate

Donations can be made directly to Team Princess on the event page but if you want you can set up your own fundraising page. Just a note at the time this post is published all the event pages might not be set up as the charities might not have set it up as yet.

1) Go directly to the event page and press start fundraising.

2) Page title- for example Princess Ali's fundraising page

3) Page summary- My fundraising page for The Princesses and M.E event, which aims to raise awareness of M.E and fundraise by becoming Princesses for the day.

4) About you- share your story and why you have joined Team Princess. As well as why you have chosen this charity.

5) Enter a target if you wish to set a fundraising goal, remember though every penny is great and not to put too much pressure on yourself.

6) Upload a photo of yourself or the Team Princess logo.

7) Upload a banner image. This could be the Team Princess logo.

8) Upload any additional photos you wish to use.

9) Create a web address for your page for example https://mydonate.bt.com/fundraisers/princessali

10) Answer yes or no to the questions. Please note there is no team page for Team Princess on btmydonate.

11) Select if you would like updates from your charity and when you would like to be notified of activity to your page.

12) Write a personal message that donors will receive when they make a donation.

13) Select create your page.

And it's as simple as that!

Good luck with your fundraising.