Category Archives: Uncategorised
Download your MACS Awareness Resources for Health Professionals here!
Thank you for joining us as we launch our first MACS Awareness Week on 1st July – we are delighted that so many health professionals are getting involved!
Here you will find everything you need to get your organisation involved in raising awareness about MACS conditions, including:
- Posters showing the 3 MACS conditions
- A leaflet with information about how we can help families affected by MACS conditions
- Research updates about MACS conditions from researchers at Oxford Brookes University and Moorfields Eye Hospital
- The latest edition of our Focus Magazine
- An e-copy of 'What makes you, you?' - a book that helps children to see that what makes them different makes them extraordinary
- An e-copy of 'My Eye Man' - a book that talks children through the process of getting a prosthetic eye fitted
Please click the buttons below to download the files that you need.
If you would like FREE hard copies of these resources, please complete our form here and these will be sent to you within 2 weeks.
We would be delighted to hear about the ways in which you are raising awareness about MACS conditions so we can share them through our social media channels. If you don't mind sharing your stories and/or photos, please do email them to helen@macs.org.uk.
We look forward to hearing all about your activities, and anticipate a successful week for all participants all around the country.
Download your MACS Awareness resources here
Thank you for joining us as we launch our first MACS Awareness Week on 1st July – we are delighted that so many of you are getting involved!
You will find everything you need to get you and your organisation involved in raising awareness including:
- MACS Awareness posters and leaflets
- Information sheets for employers
- Fundraising ideas and resources in our fundraising pack
- MACS bunting and masks
Please click the buttons below to download the files that you need.
If you would like hard copies of these resources, please complete this form for an adult pack or this form for a kids' pack by 21st June and these will be sent to you.
We would love to see photos from your awareness week events and share them through MACS' social media channels. If you don't mind sharing your photos, please email them to helen@macs.org.uk
We look forward to hearing all about your activities, and anticipate a successful week for all participants all around the country.
Introduction to MACS – a video for Key Stage 1 children
What is MACS?
MACS Awareness Week 2019
Join in with MACS Awareness Week 1st-7th July 2019!
We’re holding our first ever MACS awareness week and we want to get schools, workplaces, communities and health professionals involved in raising awareness, promoting acceptance, and fundraising. We hope this will help all people, but particularly those with MACS conditions, to celebrate differences and feel confident.
MACS awareness week is 1-7 July, but you can hold your own day whenever you like. Sign up using one of the forms below or by contacting helen@macs.org.uk
MACS Awareness Week in Schools
We would love as many children and teachers as possible to take part in our Awareness Week and we've got lots of resources to make it easy for schools to do so. If you sign up you will receive a FREE pack, including:
- Comprehensive PHSE lesson plans (KS1-4), aligned with curriculum guidance
- Tailored assemblies to raise awareness and help promote acceptance
- Resources such as children’s books, information sheets for teachers, posters and more
- Fundraising ideas and resources
- Prizes for fundraising efforts
- And if you have a MACS child in your school you can request a Goalball equipment pack, worth £80, and lesson plan, to allow your children to take part in this fully inclusive, non-contact sport for visually impaired and sighted participants. (limited availability – register now!)
These packs are available as downloads or as hard copies, both of which are free, so please choose your preferred option using the buttons below.
If you are a staff member at a school, please use the 'Register Now' button below. If you do not work at a school but would like one to sign up, please download one of the letters linked to at the bottom of this page, or ask them to contact helen@macs.org.uk to get involved.
MACS Awareness Week for other organisations and workplaces
We know that MACS conditions don't just affect children - the effects are felt by parents, adult siblings and people with MACS conditions long into adulthood. People affected by these conditions, in any capacity, can struggle with feelings of isolation because so few people know about MACS conditions and the impact they can have. That's why it's vital that we raise awareness in workplaces, adult education institutions and in communities and we need your help to do it.
If you sign up you will receive a FREE pack, including:
- Awareness resources such as information sheets, leaflets, posters, children’s books and more
- Opportunities to get involved in challenge events such as the marathon
- Fundraising ideas and materials
These packs are available as downloads or as hard copies, both of which are free, so please choose your preferred option using the buttons below. Alternatively, if you'd like some additional information that you can take to show people at your organisation to persuade them to sign up, then please use one of the letters at the bottom of this page.
MACS Awareness Week for children outside of school
Would a child you know like to raise awareness and funds for MACS outside of school, perhaps with their sports club or Scouts group? If so, our general awareness pack for kids is probably just what they need. The FREE pack, includes:
- Awareness raising resources such as posters, leaflets, bunting and more
- Fundraising ideas and materials
- A certificate for fundraising
If you know a child who would like a pack, please sign up using the 'Register Now' button below or contact helen@macs.org.uk.
These packs are available as downloads or as hard copies, both of which are free, so please choose your preferred option using the buttons below.
MACS Awareness Week for health professionals
MACS conditions are rare, affecting around 85 children born in the UK each year. This means that most families with a MACS child will never have heard of the condition before they receive their diagnosis and are unlikely to know anyone that they can turn to for peer support. That's where we can help. We want as many hospitals in the UK as possible to feature our resources in their waiting rooms so that, right when they need it most, families know that they aren't alone, that there are others out there facing the same challenges and that there is support out there for them.
If you sign up you will receive a FREE pack, including:
- 6 posters – 2 showing each MACS condition
- 20 All About MACS leaflets
- 1 copy of our My Eye Man children’s book (about a child having a prosthetic shell fitted)
- 1 copy of our What Makes You, You? children’s book (about celebrating whatever it is that makes you unique with a focus on MACS eye conditions)
- 5 copies of our current Focus magazine and a subscription to receive 5 copies of each future edition (2 editions per year)
- An annual update from researchers into MACS conditions at Moorfields and Oxford Brookes University
These packs are available as downloads or as hard copies, both of which are free, so please choose your preferred option using the buttons below.
There is the option within that form to sign up for the 2019 Awareness Week without receiving the ongoing research updates and magazines.
£25 for 25 Years Challenge
And finally, we would like to challenge all of our supporters to raise £25 this year to celebrate MACS' 25th anniversary. Are you up for the challenge? It is up to you how you raise your £25 - you could bake, make, sell, cycle, walk or talk (or not talk!). Everyone who raises £25 will receive a personalised certificate, and if you go over and above and reach £100 you will receive a special 25th anniversary MACS medal. To sign up, please contact kaja@macs.org.uk or complete our form using the the button below.
Fundraiser of the Month – March 2019
Congratulations to Anna Butler!
Congratulations to Anna Butler! Anna is training to run the London Marathon alongside friends Jo and Karen, and they have joined forces to organise a wide variety of activites. With 4 weeks to go, the team have aleady reached their target but they are planning more! Anna tells us more below.
Congratulations Anna! Please tell our readers what you've been up to!
Myself, my former colleague and friend Jo, and our good friend Karen, are all training to run the London Marathon for MACS. We decided to form a fundraising team and join forces to raise as much as we can for MACS. Here are some of the events and ideas we have done to raise our money!
First of all, I set up a Virgin Money Giving page and promoted my link a lot over the last few months. My lovely sister Nathalie said if I reached £300 by a certain date she would have her very long hair cut very short so I posted this and got to that target very quickly! I also ran little competitions in exchange for donations, for example I gave away a Mrs Hinch hamper of goodies.
Karen’s two little boys have been trying to do 131 miles (5 marathons) on their bikes to support us, which they have almost completed and have so far raised £225!
As until recently myself, Karen and Jo all worked together in the same primary school so we organised a Movie Night for the children! We charged £2.50 per ticket and our local Morrison’s provided popcorn and drinks. We showed 4 films simultaneously in 4 different rooms. We had to use the hall for The Greatest Showman as it was so popular! We made £375 from this event!
My next idea involved Krispy Kreme donuts- everyone loves a doughnut! I googled a lot of fundraising ideas at the beginning and this one stood out. Krispy Kreme will sell trays of a dozen donuts to fundraisers for £5.50. We sold them on for £1 each or £10 per dozen. We advertised Krispy Kreme Friday for the day we broke up for half term. We didn’t know how many boxes to order so went for 22 (264 donuts) and we sold out within 5 minutes!!! We made £142 but as it had been so successful we decided to do it again 3 weeks later. This time I took pre orders of 50 boxes(600 donuts!) this was the maximum number of boxes available from KK so I contacted them and begged them for another 20 boxes. Again we sold all of them (840 donuts!) and made £350!
The next fundraiser was a Quiz night. I contacted a local pub and asked them to host a quiz night. They were more than happy to do this and did most of the leg work. We advertised it on Facebook and had all but one table booked before the night. We begged borrowed and stole prizes for the raffle and we pre-sold tickets to lots of people as they didn’t need to attend the quiz to buy one. We had some amazing prizes including an annual family pass to the sealife centre and many vouchers and freebies donated from local businesses! It was an amazing night and we made over £350!
We have almost reached our target now between us all but next Friday (5th April) we are launching our new daily mile track on our school field. We have named it Fit Friday! Myself and Karen will be running around the quarter mile track 105 times throughout the school day and the children will be coming up in their classes and seeing how many laps they can do in a half an hour slot. They have taken sponsor forms home and are busy getting sponsors for Macs! It will be a very exciting day!
Wow, that's incredible! You've worked so hard and it has clearly paid off! Do you have any advice for other fundraisers?
We have really enjoyed all the various fundraising events we have organised. If I could give advice to future fundraisers, I would say do your research, keep it simple, and involve local businesses and people if possible. We have found so much generosity out there! And don’t forget the donuts....everyone loves a donut! 🍩🤗
That's brilliant, huge well done again! How are you feeling ahead of the Marathon in 4 weeks' time?
There have been highs and lows in our training but I'm really looking forward to the day and can't wait to soak up the atmosphere on such an amazing occasion! The London Marathon was always on my bucket list and as I'm 40 in the summer I'm so glad I have been given this opportunity!
Focus magazine – March 2019
We are delighted to share a very special edition of Focus, telling you all about our plans for MACS' 25th anniversary celebrations. Please click the button below to open the magazine.
Fundraiser of the Month – February 2019
Congratulations to Keeley Scott!
Many congratulations to Keeley Scott, who took over the Basildon Kreate Dance Centre for a day to host a Big Kidz Bop Event, complete with a dance routine, fashion show and a Big Bop Picnic, raising an incredible £1020 for MACS! Helping as a drummer was Keeley's 18 year old son Harrison, and the pair are now preparing to tackle the London Marathon together in aid of MACS. We caught up with Keeley to hear all about her event.
Congratulations Keeley! Please tell our readers what you’ve been up to!
Hi MACS Family! I’ve been busy raising lots of money! I run a children’s Dance School in Basildon, and last week we held the MACS Big Kidz Bop Event! Kidz Bop is a brand that changes lyrics to the latest pop songs to make them more child-friendly, and releases compilation albums featuring children performing contemporary popular songs.
We had fabulous support from all the wonderful children from Kreate Dance Centre who paid £20 for a place! On arrival they warmed up to our live drummer, my son Harrison, who is also running for MACS! They then learnt a street dance routine from Kidz Bop! They then enjoyed a little bling factor and decorated cool sunglasses and had a glitter hair make over ready for the red carpet fashion show! The Kids Bop Picnic was definitely the highlight with my wonderful mum making hundreds of sandwiches! Hard work pays off - we raised £1020!
That's amazing! Well done everyone! How did you come up with this idea?
We love running holiday workshops at the school so this was a great opportunity to charge a bit more money for this fantastic charity. Everyone paid direct to my fundraising page. Kidz Bop is a brand that changes lyrics of the latest pop songs to make them more child-friendly. The age group was 4 to 11 years and as many as 47 children signed up!
Could you tell us a bit more about the sunglasses, hair glitter and the fashion show?
We rolled out a red carpet to make it extra special. I raided four different 'pound' shops hunting for the sunglasses and the kids decorated them. Two fabulous friends took care of hair make over - I definitely can’t take the credit for that!
What made you want to run the London Marathon and how are you feeling ahead of it?
Marathons play a big part in our family. Many years ago my uncle volunteered at Tower Hamlets running club, which led to us helping out at a London Marathon feeding station. There was no bottled water back then, only cups, and I remember my dad filling up dustbins from the fire hydrant. I spent hours with my head in the buckets filling up plastic cups! It was such a crazy day but I was hooked! I told my mum when I was old enough I was definitely going to run!
I always promised my son Harrison that when he turned 18 I would be turning 50 and we would run together so this is it! We are the Tortoise and the Hare!
This is my 5th and last one (I always say that, until the next time) and first for Harrison, and we can’t wait!
Do you have any advice for fellow fundraisers?
Don’t be afraid to ask! I was recently told a story about a fellow fundraiser hunting for raffle prizes. You just wouldn't believe what was donated, even a weekend break in Centre Parks!
Break a leg everyone, see you on the finish line!

MACS Fundraiser of the Month – January 2019
Congratulations to Wiki Solly, our Fundraiser of the Month in January
Congratulations to Wiki Solly, our Fundraiser of the Month in January! Wiki is MACS' only fundraiser running the London Marathon 2019 with a guide runner. This month, not only has she organised a successful fundraiser but she has also been invited to give a speech as an inspirational role model for those in the VI community. We caught up with Wiki and asked her about her very successful month!
Congratulations on being our Fundraiser of the Month! Could you tell us a bit more about what you’ve been up to?
Earlier in January I organised a Quiz and Raffle Evening held at a local pub. A friend kindly offered to be the quizmaster and we had a variety of rounds, including a music round connected to vision and an anagram round based on the London Marathon route!
The event was advertised beforehand, but someone (I have no idea who!) contacted the local radio station who promoted it - and ended up with a cracking turnout.
It really took me out of my comfort zone asking local businesses for prizes - and I was astounded by the generosity of so many local companies. I’d managed to sell a number of raffle tickets before the event with my husband selling a lot at his work. On the event night my mum did an incredible job selling even more. Overall I managed to raise £779.61!
I also raised £40 from a Guess My Name competition held at a local primary school where I’d been invited to speak as an inspirational role model for those in the VI community.
That sounds amazing. It’s great that so many local companies supported you! Do you have any advice to others who are considering doing something similar for their fundraising?
My advice for those fundraising would be: 1) Don’t be intimidated by what other people have got for their raffles! Try sourcing your own prizes and you will be surprised what you can achieve. 2) Having a wide range of prizes will increase interest in your raffle, for example a signed rugby ball, whisky and Scalextric were the most popular. 3) Think outside the box!
Could you tell us a bit more about the school talk and the Guess My Name idea? How did your talk go?
My Guess My Name competition came from a discussion with a friend who teaches at a local primary school. They have a VI pupil and I said I’d be happy to go in and do an assembly on being VI, participating in sport and running the Marathon. I was also willing to run the Daily Mile with each class (7 miles in total). I had a fantastic day with the pupils asking questions, having a go at guiding me, being guided themselves and guessing the handmade teddy’s name (kindly donated by a friend). I’ve said I’ll go back with my medal to show them. This was my favourite fundraising activity as the pupils benefitted the most, especially doing the Daily Mile with me.
You are our only runner who will be running with a guide this year. Do you have any advice to other visually impaired runners who might be considering running the marathon in the future?
Having a VI doesn’t mean you are limited - you just have to adapt. Having Paul as my eyes during the marathon will be paramount to my safety. My aim is to enjoy this experience as much as possible. Paul is a fantastic guide, really positive and encouraging. I’m really honoured to be running with him and running for MACS.
How do you feel ahead of the marathon later this year?
I’m feeling a little nervous about the marathon, especially the start. I’m going to find it overwhelming on my other senses, so if you do see me at the start, please come and tap me on the shoulder and introduce yourself as I won’t see you if you wave! 😄 Team MACS 2019, let's do this!!!
MACS Fundraiser of the Month – December 2018
Photo Credit: Simon Pizzey, www.gloucestershirelive.co.uk
Photo Credit: Simon Pizzey, www.gloucestershirelive.co.uk
Photo Credit: Simon Pizzey, www.gloucestershirelive.co.uk
Congratulations to Danny Barthorpe and Marcus Tyler!
We are delighted to announce our Fundraisers of the Month in December, Danny Barthorpe and Marcus Tyler. Danny and Marcus have been writing and hand-delivering Letters From Santa in their local area, as well as catching the attention of the local newspaper, Gloucestershire Live, which has further helped attract interest allowing them both to raise an incredible £1,168 for MACS so far! We caught up with Danny to find out a bit more about the letters.
Hi Danny, Congratulations on being our Fundraiser of the Month! Could you tell us a bit about your fundraising idea?
For years I have been hand writing my children’s letters from Father Christmas with personalised content and full of Christmas magic. I thought it would be nice to offer this service to others in return for a small donation. Even better than this, I managed to persuade my friend to do it too! As we are both training for the marathon, all letters are hand delivered and will form one of our training routes!
That sounds amazing! What is it like to be Santa?!
When a parent comes to us we ask them to tell us about the child's achievements and milestones over the past year. We also ask names of pets and family to add that in too. Sometimes if I know the parent of the child, I have written and told them that their mum or dad was once on the naughty list and give a comical reason as to why. It is a bit of added fun.
Sometimes the parents have also asked me to remind their child it is not all about what they will get and to remember that Christmas is a time for family. There have been some really very heartfelt requests of messages that the parents have wanted to get across to their children and no one has been disappointed.
How many have you written so far? Did you notice a rush of requests after the newspaper article has been published?
We noticed a lot more requests from further afield after the newspaper article. So far we have sent letters all over Gloucestershire and Cornwall, some have even gone as far as Wales!
In total we have produced 103 letters to date between us both. Sadly, because every letter takes about an hour to produce from start to finish, we have had to stop the service to ensure all letters are ready in time for Christmas.
What was it like to have the reporter at home interviewing you and filming? Would you encourage other fundraisers to try and contact their local newspapers? Do you have any tips?
The reporter was fab! They made me feel very at ease. They made me feel so at ease that before I knew it I was dressed in my running gear, wrapped in tinsel with Reindeer antlers on my head. We were all laughing.
They were very professional and helped so much with what to do and say. I would 100% recommend contacting them, they were more than happy to do anything to help raise awareness and money for the charity.
Well done again and congratulations! We wish you all the best for the London Marathon and look forward to seeing you at the finish!
This has been a very strange experience. I never expected just a few letters to raise so much! People have been very generous and willing to donate extra which is a testament to the good work and help you provide at MACS. Can't wait for the London Marathon now!
You can find out more about Danny’s letters here: https://www.facebook.com/santaletterforMACS
Read the full newspaper article here: https://www.gloucestershirelive.co.uk/news/gloucester-news/meet-man-delivering-letters-from-2255198
Special mention to Jude Ackerman and Anna Butler, who also stood out in their fundraising this month! You are all amazing and everyone at MACS is grateful to have such special fundraisers supporting us.
If you would like to enter next month's competition please email fundraising@macs.org.uk with your story.



