Passionate about Polymicrogyria…

Isabella as you know was diagnosed with Polymicrogyria in December. Since that time I have been trying  to find out as much as I can about it. This has been a struggle since there is very little in the way of information out there.

As I found such great support from the SWAN UK Facebook group, I searched for groups on Polymicrogyria. I came across 4 international groups. These groups while very friendly, were large and had people from all over the world. I found myself getting lost on the sheer volume of traffic in some of the groups. I wanted to speak to parents from the UK, so like SWAN I could get in  touch and meet up with people local to me. So I asked about on the other groups if other Mums would be happy to join a group that was just specifically for the UK and Ireland. I was mindful of upsetting the other groups and stressed that the new group would merely be an addition to the others. Another Mum contacted me and said that she was interested in helping. So together we set up the group. We called it Polymicrogyria Family Support UK and Ireland.

Not long after we set up the Facebook group, Suzi and I got chatting and realised we both wanted the same thing – more awareness for Polymicrogyria in the UK and Ireland. As I said there is very little in the way of support and information out there, even the teams that work with our children know very little about PMG. So we decided that together we would set up a website. We wanted the website to give people more information about PMG and also lead families to our friendly Facebook group which was starting to grow nicely. We then thought about starting a charity, one that was for families that were affected by PMG. This along with the website became the focus of our attention.

It then became a daily chat on text or Facebook on the designing of the logo for the charity. Choosing the colour was relatively easy. We wanted to stand out from other charities and move away from the many pinks and blues that are out there. Purple is the colour associated with epilepsy, which is something that affects a lot of sufferers of PMG. We felt it was important to keep the full name of Polymicrogyria in the title rather than using the shortened PMG . We liked the name that we were already using for our Facebook group as like Ronseal it does what it says on the tin.

The Charity is all about raising awareness and supporting those families affected by Polymicrogyria. We felt that charity should have  a friendly mascot and after batting ideas to and fro we decided on ‘Stars’, as that is what we feel our children are. There are three stars, ‘Poly’, ‘Micro’ and ‘Gyria’. We wanted the slogan to be short and catchy -‘Give hope to a Star’. The future with anyone suffering with PMG is unknown but the strength and determination they show is inspirational, by people supporting the charity they are giving hope to our ‘Stars.’

 

My Husband Paul is in the RAF and only a few days after we launched the charity he had a dinner night which raised £212. This was a simple way to raise money, with merely a bucket and logo on and a brief intro about the charity, over £200 was raised. Imagine what we can achieve on a bigger scale with more preparation and organisation.  His work place has now also said that ‘Polymicrogyria Family Support’, will be the official charity for any future fundraising events, which is simply amazing.

Whilst we are putting the finishing touches to the website, we have set up a Facebook Page that people can like.  This will be the place to raise awareness on Polymicrogyria and our charity, as well as future fundraising events. Now it is up and running, if you haven’t done so already, can you please share it on your profiles and ask your friends to do the same.

It is an amazing feeling setting something with your loved ones as inspiration. I honestly have a great feeling about it all. We already have 219 likes which is fabulous, but I know we can achieve more. Already we have informed one Mum, who had never heard of PMG before and thinks her Daughter may have it and she will be talking to her daughter’s specialists. This is the aim of the charity is, to reach people and spread awareness and hopefully find some more people who could benefit from our private FB page.

We will in the near future be selling wristbands and organising Fundraising events. So watch this space. So for now if I could ask you again to like the FB page and post it on your profile asking your friends and family to do the same xx

https://www.facebook.com/PolymicrogyriaFamilySupport?fref=ts

 

THANKS AS ALWAYS for your support 🙂

 

Updated cover photo

 

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