What’s Your Story

What’s Your Story

A Guide to Sharing Your Story

Storytelling is one of the most powerful ways to help raise awareness of rare medical conditions.

Stories can help so many people. People who need to know they aren’t going through it alone, people who can identify with what is going on and help speed up a diagnosis, people looking to raise funds and increase understanding of rare conditions that precious little is known about.

 Stories create a connection. They help to explain our world and they help others to make sense of their world. Let’s face it, we all like a good story! And we’d really like you to share your story.

 If you’ve thought about writing down and sharing your experience but aren’t sure where to start, the following 3-step plan might help:

Stages of storytelling


A good planning stage sets up the foundation for the rest of the process.

Think about why you want to share your story. What is the main thing you want people to feel, think or do? Was it that you found it so hard to get a diagnosis? Was it that nobody seemed to listen to you? Was it that you found great support somewhere and want to let people know? There are many ‘angles’ you could take with your story. It might be that you want to tell the whole story, which could take some time, so perhaps consider telling it in stages.

Once you have your angle, think about the obstacles that were in your way. The obstacles are the ‘conflict’ and conflict is crucial for storytelling. It doesn’t mean physical conflict, though it sometimes might be, think more about the hurdles you had to jump over to get to the point you needed to be at.

 The final part of the planning stage is the ‘emotion’ of the journey. What did you feel? Emotion engages the reader and makes the story more compelling, more ‘real’.


CGF Storytelling

(or, what did you want, what stopped you, how did you feel)


With the basics of your story written down at the planning stage, the building stage is the fleshing out of the details.

Think of particular incidents that will help bring your story to life. Was there a particularly difficult appointment, a reaction to a medication – these snippets and anecdotes help build the emotion and place the reader in the journey with you. They can be funny, or sad, or frustrating – the key thing is that they will be emotional.

 If you struggle to think of some, talk to family and friends – it could be that you’ve forgotten about ‘that incident’ and that speaking to a friend will bring it all back.


The final stage (well almost the final stage) is the writing.

The best tip here is to write as if you were telling someone the story. Keep it conversational and informal.

 Use plain English (if that is the language you are writing it in!). Use short sentences, this helps keep it punchy and quick and whisks the reader along the journey.

Most of all, be yourself. This is your story, it is very personal to you. Don’t think you have to write it the way people think you should write it. It is your experience and if you tell it in your ‘voice’, not only will be easier to write, the reader will engage more as they will get a sense of who you are – which builds the connection.

The Afterwards Bit

Once you’ve planned, built and written your story the best thing to do is sit back for a while.

Let it rest before looking back over it. Does it tell the story you wanted to tell? Are you happy with it? Once you’ve re-read it and tweaked it, perhaps give it to a friend or family member to read through.

 Finally, well almost finally, leave it to rest a little bit more. The experience of sharing your story might well bean emotional one. You will be re-living events and emotions that might well have been very tough at the time. You might be upset again. Writing your story can be a rewarding release and feel like closure, but it also might stir up emotions again. So let the story sit for a bit longer, make sure you feel ready to share it. Just because you’ve written it, doesn’t mean you have to share it. Are you ready to let the world see it? If not, do not worry, put it in a drawer and let it rest until you are ready.

If you are ready to share it, then you can send it to us – and if possible, with photos. Photos are another way of giving the story life and engaging the reader.

You’re Done

That’s it. You’ve written and submitted your story, and it will be used to help encourage and inspire others.

We could use that story in:

  • Our newsletter
  • Our e-newsletters
  • Our website
  • In fundraising applications
  • Annual reports

The most important thing is that you own your story, we will ask you where we can use it and we will only use it in that way. If you feel it is time for us to stop using it, then let us know. You own your story and we wont use it without your permission.

What Next

If you are interested in telling your story, get in touch

Or, perhaps you would like to tell your story on film? We have recently used personal stories in the video presentation that Sally, our Growth Nurse Specialist, has been developing. Get in touch with us if you’d like to know more or want to film your experience.

Trustee Changes

Trustee Changes

New Chair for CGF

After many years of guiding us as Chair, Nick Child has stepped down from this position for family reasons, however thankfully he will still play an active part in the Trustee board moving forward.

We are delighted to inform you that the trustees have thus elected a new Chair and also a new Vice Chair, as this position was vacant. Please join me in welcoming Jeff Bolton as Chair, and Jessica Watts as Vice Chair. Jeff has been a trustee with us for 18 months and brings an immense amount of experience, having previously been employed as European Brand Director at Pfizer, a well-known pharmaceutical company. Jess has been a trustee for a number of years, she is a regular participant in our Facebook and virtual support groups and those of you who have attended conventions will know her as an active part of the MPHD group and mum to Skye.

Please join me in giving thanks to Nick for all his efforts, time and commitment as Chair, and to welcoming Jeff and Jess as they step forward.

We would welcome any expressions of interest for new trustees to join us, particularly those with legal and HR experience, although all applications welcome. Please contact Rachel if you are interested in finding out more.



Reclycing Initiative Launched by Novo Nordisk

PenCycle is the exciting new environmental initiative by Novo Nordisk which aims to drastically reduce the amount of waste produced by pre-filled medication pens.

As part of their ‘Circular for Zero’ environmental change policy, they have created a recycling scheme for the pens, which includes their pre-filled growth hormone pen, which will help reduce the 23 million pens currently going into landfill or being incinerated each year.

The plan is simple, instead of placing your empty pen in the sharps bin, take the needle off and put the rest of the pen into the PenCycle box (the needle goes in your sharps bin as usual). The Pencycle box will be delivered to you through your Alcura service and Alcura will take the box away when it is full.

The pens will then avoid landfill and may then be recycled into chairs or light bulbs.

The pilot scheme will run for 6 months initially, in a small number of areas using the Alcura delivery servie. During the pilot Novo Nordisk are looking for a 30% uptake to the scheme, and then will then decide how to roll the programme out further.

To find out more download the PENCYCLE leaflet

or visit the growth hormone pre-filled pen WEBPAGE

Captain Tom 100

Captain Tom 100

The Captain Tom 100 Fundraising Challenge

To celebrate the amazing achievements of Sir Captain Tom, from Friday 30 April to Monday 3 May, The Captain Tom Foundation are asking everyone to dream up a challenge based around the number 100 and fundraise for a charity of their choice.

Everyone is invited to take on a challenge around the number 100 anytime and anywhere over Captain Tom’s birthday weekend. It’s so simple.

Think up your 100 challenge. It can be anything you like – from walking 100 metres to baking 100 cakes or writing 100 letters

Take on your 100 any time between Friday 30 April and Monday 3 May

Fundraise for the Child Growth Foundation

Share your 100 on social media using #CaptainTom100

To sign up click HERE and choose the Child Growth Foundation as your chosen charity – and let us know what you will be doing!

Good luck and thank you


Stuck for ideas on what ‘100’ you can do?

Download this handy cheat sheet…

Captain Tom 100 Ideas

Santa Run

Santa Run

Autumn is here. Leaves are turning brown. There is a chill in the air and soon there will be frost on the ground. That can only mean one thing…

Christmas is coming!

So why not challenge yourself to a festive fundraiser and support our incredible work.

It is really simple.

  1. Grab a Santa suit
  2. Set up a fundraising page – Give As You Live
  3. Run

What could be easier? Well, yes, sitting at home watching the telly could be easier but it wouldn’t be as much fun, and it wouldn’t raise any money for the wonderful CGF.

Santa runs up and down the country have been cancelled this year but that shouldn’t stop the fun! You can set your own distance, create your own challenge and spread some Christmas cheer.


CGF Virtual Convention

CGF Virtual Convention

***Exciting News***

We are delighted to announce the dates for our Virtual Convention. It is free to full members this year, so please make sure your membership is up to date.

To become a full member visit: Membership