Page 1


IN THIS ISSUE PATRONS Rt Hon David Blunkett MP Richard Collins FRCS CHAIR Barry Stickings Tel: 07790 432980 E-mail: VICE CHAIR Phil McEvilly Tel: 0121 6035858 E-mail: SECRETARY Lynda Rhodes Tel: 0800 169 8088 E-mail: TREASURER Brian Hardisty Tel: 01695 575009 E-mail: ASSISTANT SECRETARY Fay Sumner Tel: 01745 889591 E-mail: MACS OBSERVERS Bill Ottaway Tel: 01553 674390 E-mail: Jennie Jones Tel: 01487 740951 E-mail: Debby Clark Tel: 01702 341632 E-mail: Caravan Louise Eggins Tel: 01822 855333 E-mail: MEDICAL LIAISON John Lowrie FMIOP E-mail:










9 - 11


12 - 16



Chairs Report Hi Everybody, Welcome to the 2008 summer newsletter I would like to say thank you for your votes electing me as Chairman of MACS in 2008. I am a passionate believer in what MACS stands for. The committee and I welcome your views and support in order for us to continue supporting families in the future. You have a great MACS team who work hard. Without them MACS would not exist. I would like to thank all the previous Committee members from the inception of MACS. Everybody has been fantastic in helping achieve so much in making what MACS is today. I would not have been confident to be part of the team without them. On a personal note I would again like to thank Lynda for all the hard work and hours she puts in. I know all MACS members echo this. We are now promoting MACS in more areas than ever before and this includes having a publication in a journal that will be read by many Doctors in the UK, for many families the first point of contact. Debby Clark is also reestablishing the regional supporters, which I feel is a very important step forward. If you are interested and would like to help you can read Debby’s report in the newsletter. Louise is now running all the Caravan bookings and this is going well if you would like to book for 2009, dates will be released in January you can then

3. contact Louise via the caravan page on the website or fill out the application form which will be sent out in January. We have linked up with the MAPS team in the USA a support group set up by mothers of children with Anophthalmia. Microphthalmia Anophthalmia Parent Support This is a great site to sign up to there are many parents in the US who also enjoy being members of MACS. The Eyeless Trust and MACS are working towards a stronger relationship so we are both in a position to help each other with giving advice and guidance to families. 2008 has so far been a great year. The London Marathon was a roaring success with 122 runners pounding the streets of London raising thousands of pounds for MACS. Thank you. Next it’s the Ladies 5km runs in London, Birmingham and Liverpool I wish you all well in advance and again thank you. We are working now with Martin from VICTA with regards to Marathon places. Everybody would like to pass on our thanks to John and Nina Brookes who supported MACS over past years in the organization of our Marathon places. We have had many donations from

4. individuals, families and organizations we thank you all. You can see the list in this edition. We have new MACS merchandise, which you can now purchase via Lynda, Tim and Jenny, this is also in this edition. Thanks to Tim and Jenny Lupton for storing and dispatching. This year MACS has succeeded in providing an increase in the amount of specialized equipment and facilities we have provided for our MACS children. I personally feel that this is where we are pioneering. It is important that all MACS children should have the same access to all equipment as their sighted peers. You can see some letters from our members regarding the equipment and how it has helped them in this edition. The website is on track even though we had a few problems with spamers as all websites do but with the help of Sue Heather from Columbus it’s as good as finished. There are a few minor updates. Please use the site it is there for you all to share stories and answer the many questions we all have from time to time. The 2008 AGM was a great success, as you can see from the report in this newsletter it was a weekend to remember. For our new families attending for the first time all commented how much they enjoyed it and the valuable support and advice not only from other families but also from our guest speaker Jim Dickinson. We aim to make 2009 even better with

Robbie Crow organizing a Talent Show for the Saturday evening and Phil McEvilly our Vice Chair looking at a real participation event for all families on the Sunday during the day and later in the evening. Watch this space! If you would like to attend next year’s please see the enclosed application form. I am looking forward to 2008/09 and will hope to continue to be part of MACS into 2009 and beyond. If you have any questions or ideas then, please contact myself, or any member of the team. Have a great summer and we look forward to seeing you all soon.

s g n i k c i t S y r r a B

WE NEED YOU! A few years ago MACS set up regional groups. As well as having a local contact should a new family contact us, one of the aims of these groups was to give families an opportunity to meet up with others within their area. Some of the feedback from this years AGM was that many families would like to get together with others that really understand their problems, worries and needs more than once a year. So we thought maybe we could think about running some more of these events. In the past families have met at zoos, theme parks, and in museums. They have attended Santa specials at railways, held parties in halls and

5. picnicked on the beach together, as well as lots of other fun things for children and the adults of course! To be able to hold these events again we need people that would be happy to organise, or help to organise, these events within their regions. Are you one of those people? Do you have an idea for a good place to meet where you live? If you are interested please contact Debby Clark on 01702 341632.


On Thursday 6th March 2008 Lorna Trimble (on the left with one of her models who donated ÂŁ200 herself to MACS) organized a Fashion Show with the help of her students, friends and family in Newry, Northern Ireland. The evening was a great success and Lorna helped raise over ÂŁ1000 for MACS. Barry and Lynda attended the event and provided further information to the many supporters who made it a packed house.



As most MACS parents and supporters probably know, I work as a consultant paediatric ophthalmologist at Moorfields and Birmingham Children’s Hospital looking after children with microphthalmia, anophthalmia and coloboma. I also lead a research study investigating the causes of developmental eye anomalies, in families with microphthalmia, anophthalmia and coloboma (many MACS families have kindly taken part). Our group has been involved in identifying new genes and defining the conditions they cause, including SOX2, OTX2 and BMP4 and several other new genes. There are likely to be many more genes involved and therefore a possibility of understanding the causes in more families. Our research is carried out in a laboratory in Oxford University. As news about the research spread, I realised that some families who wanted to participate in our study were not always able to come to London or Birmingham; I wanted to be able to meet them at my lab in Oxford and other local hospitals I visit. Now, thanks to very generous support from MACS I have a portable set of examination equipment which enables me to examine parents and children anywhere, and in my Oxford University Department. We currently have 270 families enrolled in our study; however we have around 200 new families who have expressed an interest in taking part in our study, but are not yet enrolled. The more families we can recruit, the greater likelihood we have of identifying further genes involved and being able to provide answers to MACS families. It is probably that over 100 genes are

important, and therefore if we can enrol 400-500 families in the study, this greatly raises our chances of identifying further genes and helping more families. Integral to the research study is the examination of the eyes of children and their family members to determine who might be affected, and which parts of the eye are involved. This is absolutely critical to being able to understand which genes might be involved as some genes are important in developing certain parts of the eye. This will allow us to tailor our study appropriately and look more closely at the relevant genes. The MACS equipment will make a huge difference to our understanding of microphthalmia, anophthalmia and coloboma and give many families an opportunity to learn more about their eye problems and the likelihood for further generations. Thank you MACS! If any MACS family is interested in taking part in the research study, please send email enquiries to Dr Ragge’s family co-ordinator on angela.martin@ or telephone +44 (0)1865 272169 (main number) or (0)1865 282834 (direct Thursdays and Fridays). Dr Nicola Ragge MD FRCOphth FRCPCH Honorary consultant ophthalmologist, Moorfields Eye Hospital and Birmingham Children’s Hospital




 

 


 



 



 

 


 DESCRIPTION

With MACS design

  

MACS Logo 

MACS Logo  MACS Logo

  In with  blue or red     MACS logo 

 


 MACS Logo 

 Memory   1GB with USB MEMORY STICK  MACS logo  With MACS logo 

 


Waterproof jacket     with embroidered   MACS logo bag.  Waterproof injacket     with embroidered  MACS logo in bag.    Zip front with     embrodered   MACS logo.    Zip front with embrodered  MACS logo.     With embroidered  MACS logo.   







 

With embroidered  MACS logo.    On key chain with  MACS logo.   





With new MACS  poster design.  

With embroidered  MACS logo 

7. PRICE PER  ITEM

 4 for £1 







£1.50 

 £2.50 

 or 50p each 3 for £1     £6.50 


 



  



 £12.50



£8.50   


 


  


 

75p each or 2 for£1 

£2.50 


Orders can be placed with Lynda

              


MONMOUTH GOLF CLUB Captains’ Charity Day For MACS and Macmillan Cancer Support

Photograph courtesy of Trudy Carradice from South Wales Golfer

Barry Stickings (Chairman MACS), David Evans (Men’s Captain), Sophie Stevens (Macs member), Sue Edwards (Ladies Captain) & Carol

Despite a forecast of heavy rain and strong winds for Saturday 21st June, the weather looked down favourably on David Evans, (Club Captain) and Sue Edwards, (Ladies captain) for their Captains’ Charity day at Monmouth Golf Club South Wales. Under a cloudy sky, but no rain, a total of 30 teams played in this event. The Captain’s Charity day was in aid of The Micro & Anophthalmic Children’s Society (MACS) and the Macmillan Cancer Support these were the two charities chosen by the captains to support during their term of office. Carol Tucker of Macmillan Cancer Support and Barry Stickings, Chairman of MACS, thanked both Captains, and

Monmouth Golf Club, for organising the event, and in particular, they wanted to say a very special thank you to the Sponsors and to the team captains for supporting their charities. Barry gave a brief resume of how the charity had started and the types of eye conditions that some of the children are born with and the support that the charity gives to the both the families and children. The result on the day was a staggering £ 4,259 to be shared between the two recipient charities. The club intends to carry on fundraising until the end of the year when a presentation will be made to both Charities.

FLORA LONDON MARATHON SUNDAY 13TH APRIL 2008 THE MACS RUNNERS Well what a great day. One hundred and twenty two (122) runners took partraising funds for MACS on what was a day of assorted weather conditions. As you can see from the photographs they all had a brilliant time and finished with many achieving personal best running times. From the start to the end there were supporters from their families, friends and MACS members giving them that encouragement to reach the end.


with his daughter Amy in Horse Guards Parade to say a personal thank you on behalf of all MACS members for running to help MACS. THANK YOU AND YOUR SUPPORTERS FOR MAKING THE FLORA LONDON MARATHON 2008 A DAY TO REMEMBER

If you feel that you could run for MACS in 2009 just fill in the application at www. Barry (Chairman) his wife Kelly and son Toby were joined by Bill (observer)

Some of our many MACS runners 2009 Nicholas Mark Mark Rahat John Robert Coral Michaela Laura Liam Paul Wayne Andrew Darren R. Ronnie Rocky Andrew Nathalie Rebecca Emma Emily Philip Shaleena Colin

Murphy Paul Pearce Des Oldfield Barry Perveen Mark McDonald Rita Field Kenneth Dunstan Kumud Bethell Keith Wood John Johnson Lindsay Astbury Jonica McPherson Mark Horne Louise Whitaker Julian Cheetham Rod Grierson Lindsey Burrluck Kate Juchau Sally Noorian Donna Cronin Andrew Hartland Colin Rosendale David Sheikh Lee Thorne Michael

Dennis Samantha Williams Wadsworth Anna Jones Hearn Kevin Smith Taylor James Watson Taylor Heather Burton Wilson David Hinds Mistry Anne Marie Bland McCarthy Jane Lee Theobald Katie Reilly Wells Laura Jane Sachse Love Katherine Cameron Elsbury Lisa Waters Hart Mark James Mills Gunnell Matthew Challis Ashman Dan Martyn Worthington Kevin Hobson Elliott Paul Andrews Ingledew Tom Pearse Breaden Dean Vian Rutley Heather Bartley Dexter Tony Egbe House Paul Dommett Thompson Maria Cresswell Ruocco Michael Greenhill

Simon Gareth Marvin Sheryl Dan Chris Atul Catherine Philip John Rich Jackie Terry Dean

Merrill Lodge Seddon Alsford McGregor Sexton Patel Jones Elms Whiteford Young Glenn Giles Hughes



MACS AGM 2nd - 5th may 2008

Thursday Several members of the committee Barry, Lynda, Phil and Fay along with Tim and Jenny Lupton arrived on Thursday so preparations could start on the arrangements for the arrival of families on Friday for the 2008 AGM. Whilst at the Hotel Robson Green gave time from his busy filming schedule to come along and meet with the MACS team and spend time chatting and having photographs with the kids whilst he was filming a TV Xmas special. We were sworn to secrecy about its plot!

with the 10 new families who were attending for the first time. That first time walking into the room not knowing what to expect is pretty daunting. I am sure many remember that first meeting! Established MACS families are old hands at making new families feel at ease. As usual the atmosphere was both exciting and emotional. In total 63 family groups attended the 2008 AGM. Saturday After a filling breakfast it was time for the younger children to attend the crèche run by our friends from Safehands (www. The older group were all rounded up with Robbie Crow our Ambassador to help prepare for the balloon release, along with Tim Lupton and the helpers from the Roundtable.

Barry and the MACS team welcomed everybody. Then followed a presentation of what has happened over the past year covering areas such as the caravans and a possible purchase of a new caravan maybe in the south east of England, France or Spain, website, requests for assistance and many other items were mentioned. Friday Well this was the start of the weekend and everybody was arriving from about 2pm and getting settled into their rooms and looking forward to a fun packed weekend with a few surprises. After settling in families met during the evening for a buffet meal and to catch up with what had been going on since we last met. “Doesn’t time fly? “It only seemed like yesterday! We also met

The 2009 Gala Ball was discussed and although it is in the early stages of planning it is felt that this would be an event where MACS can invite not only families but also companies and sponsors. It will also be a way of celebrating 15 years of MACS. Brian Mayor again provided all the technical equipment for the weekend and throughout interviewed and filmed many MACS families, children and events for the new promotional DVD, which Brian will be producing.

13. Jim Dickson, Head of Lancashire County Council’s Welfare Rights Service gave an excellent presentation regarding welfare rights. Jim is now very kindly helping MACS as one of our Ask the Specialists and can be contacted via jim.Dickson@ where he will assist in any questions regarding entitlements etc in relation to benefits for any MACS families. The election of the committee took place and nominations were held and the committee was elected as detailed:

Gareth and Coral both MACS parents were introduced and thanked for running the London Marathon. A short film of some of the 122 runners who ran for MACS was then shown. The new MACS promotional items were also available and these were exhibited in the Hall and included jackets, fleeces, bags, pens, memory sticks and many other items. These will soon be available to purchase via the website. Brian gave a presentation of the MACS accounts and mentioned that should any family wish to make a request for assistance to contact a member of the team. Lynda mentioned that we have made a claim with Customs and Excise for non-payment of gift aid in relation to the London marathon. This has resulted in a payment to MACS on 20.05.08 of £33,000.

Chairman-Barry Stickings Vice Chairman- Phil McEvilly Secretary- Lynda Rhodes Asst Secretary- Fay Sumner Treasurer- Brian Hardisty Observers -Bill Ottaway, Jennie Jones and Debby Clark (Caravan Coordination- Louise Eggins)                        

After Tea and Coffee the question and answer session took place, which again was extremely useful, and some  interesting discussed not    subjects   were        only with Jim but also with many family  members.  

After collecting all the children it was off to Camelot to join King Arthur and his

14. Knights for the balloon release with over 1500 balloons many held by the children so they could release them personally. Again a great blue sky as they all flew into the distance.

The Chocolate Fountain (www. was back in action with Lucy and team providing chocolate all night. It was as popular as ever mostly with Mums and Dads, strange!

Saturday Evening Everybody came along for the evening Meal and entertainment and after the 3 courses and lots of orange, blackcurrant juice plus a little beer and wine for the kids! No only joking, the entertainment commenced. Robbie Crow who gave an exciting and dynamic performance as he drummed us into the meal.

                

During the evening the MACS Awards were made and these went to:

 

After his success last year we were pleased to have the return of The Magic Matt Show ( All the children were now ready with hats and wands and watched as Matt performed many great feats of Magic which also involved many of the children   plus one which included Barry and Phil  but that’s another story! A Fantastic   Show we look forward to seeing Matt   next year. Childs Name:

Hannah Bird

Age: 9 MACS Condition: Bi-lateral Coloboma 

Achievement: Past her Grade 2 – the Associated Board of the Royal Schools Music, Descant Recorder Exam with Distinction Nominated by: Mum, Dad and Adam.

   

15. mention. But thank you to everybody for donations. Then it was time for dancing or just talking and sharing our experiences of being MACS children and parents. Sunday

Childs Name:

Rosie Holloway Age: 6

MACS Condition: Uni Microphthalmia Achievement: Has won 1 Bronze and 2 Silver for her Tang Soo Do (martial arts) in Sparing & her Forms (movements).

Sunday was left for families to enjoy being together and visiting the Hotels  facilities, Camelot and the local area.  Generally a relaxing day.    having            

 Sunday Evening

Nominated by: Joanne & Lee Holloway (Mum & Dad) Rosie was eager to enter competitions my husband & I watched from the side as our little girl who we were so worried for when she was born, to see her out there was fantastic. 


In the evening the fun began with a greeting from Sir Lancelot and the Court Jester as our families made their way into the medieval banquet hosted by King Arthur himself.

                

Childs Name:

Luke Brister

Age: 14 MACS Condition: Uni Microphthalmia Achievement: Black belt in Karate (Shotokan) after 3 years of bullying Nominated by: Sue & Mark Brister (Parents) After the presentations it was the raffle with many great prizes from so many generous people there are just to many to

                               

What followed was a night to remember, everybody wearing Jester hats, King and Queens Crowns. Many of the children came dressed As Knights and Queens. They all looked fantastic. The banquet began and we were filled with a 5-course meal and drinks that were free flowing during the meal for both adults and children.

      


 

 

             During the evening the minstrels  played their music and were joined The Knights amazed us all with feats of 

by Matthew Horspool on the tin pipe. Magic, Fire Eating, Swordsmanship They even found time to go into the and general fun and fooling around.   future and bring some tunes back to This also involved some of our families   the medieval evening. Amazing! who had a very interactive part to   play.

 

                   during         However the evening “  Sir Tim                            permission         Lupton” failed to ask from               the King to use the toilet facilities

and was placed in the stocks and as   punishment had his head shaved by  Lady McEvilly and having already The evening ended with everybody £160 prior to the event by friends and  linking hands and singing and dancing family our families increased it to £460 together for what we all agreed was and this was followed by a generous the end to a fantastic weekend. donation by King Arthur who matched the £460 a fantastic gesture. Monday We all went home!

 

A Mission for a Mission


they were only too happy to help. Mission are a specialist supplier and their web site may be worth a look as they can supply specialist seats also with belts etc... www. and even trikes.

We have struggled to get William cycling what with the balance thing and road sense issues, going out for a family bike ride just was not an option. We had bought a single wheel tag along some years earlier which was great but with William at ten now this became somewhat unstable as William grew taller and put on some weight. So we went searching for an exercise solution, Debbie and I talked about it quite a bit – wouldn’t it be great if he could cycle with us, but he clearly couldn’t do it under his own steam. Well we found it and what a revelation; we sourced a two wheel tag along, and a local shop that was happy to supply. We contacted MACS and asked what they thought as it is quite a specialist item, and

Well what a beast – a Mission piggyback mk2 it’s pretty long when hooked on and with large back wheels is 800mm wide at the back with a basket and a flag! Large enough frame to last William when he grows. It will go on either of our bikes with a bracket (although it seems to be permanently attached to mine) and William can exercise but he doesn’t have to worry about other road users – he can leave that to me and his balance is ok too – but he does need to peddle for my sake. So we are now the proud owners of a Mission twin wheel tag-along and although a bit heavy is absolutely brilliant. Debbie myself and William can all go out together, even with Jessica if we can drag her out too and we are regular sight on the country roads of Kent and with a smile on Williams face (most of the time anyway expect for the uphill bits) as well as the people we pass. Debbie, Simon, William and Jessica France

Thank you for my talking phone Thank you so much for the Talking Mobile Phone, it has allowed me to receive text messages without having to ask my Mum or Dad to read out to me. I am so happy with it and it is all down to meeting Barry from Macs at the Monmouth Charity Golf Day. I will enjoy it very much. Love Sophie. Xxxx

Sophie Stevens South Wales


A Big Thank you To MACS big for the baby seat. We have seen the bike trailers before and thought them a good idea, but to have one robust and safe enough for Rhys was out of our price range. This is where MACS stepped in - they ordered and had it delivered within a few weeks of our request.

As a family we are Craig, Alison, Gareth, David and Rhys who is 2 and has unilateral micropthalmia and global development delay.

Our long days out cycling have been made much more enjoyable as when Rhys falls asleep he no longer lolls uncomfortably in the baby seat, he can recline in comfort in the trailer. If we get caught out in the rain (not that it rains much in Wales!) he is also kept completely dry.

We’ve always enjoyed outdoor activities such as walking and cycling. Rhys loves the bikes but is getting too

Again a very big thankyou to MACS for their great help in making our days out so much more fun.

Thank you from the mcevilly family Dear MACS I would like to thank you so much for my new bed. You would not believe how it has changed my life. I now go to bed much earlier than I used to, because I have so much more room to sleep and play if I wake up early. It has really helped my mummy and daddy as well. It is much easier for them to get me changed as the bed is able to go up and down which helps my mummy’s back, as I am getting bigger. It is really great because they can also get in with me for cuddles or if I my not feeling well they can stay near to me.

My new bed as given my mummy and daddy a better nights sleep. I have the cot sides all the way round I will not fall out. I’ve sent you some photos of me in my bed so you can see how happy I am with all the room to play and sleep. Thank you so much again. I really appreciate what you have done for me and my Mummy and Daddy Lots of love Eoghan McEvilly xx



Marla has been totally blind since birth and therefore some things that other sighted children take for granted, like playing on the computer were not accessible to her. That is until Barry Stickings and the MACS team very kindly paid for a copy of HAL to be installed on Marla’s home laptop. HAL is a screen reader for blind people and Marla was already using it at school. She was ecstatic to receive her very own copy for home use. Since getting HAL, Marla has come on in leaps and bounds when using her laptop. She has progressed extremely well with her touch typing and at recent speed tests taken at school, she achieved typing speeds of 25 words per minute – not bad when you are still a month short of your 10th birthday!

As part of the school work, Marla had to do a presentation to the class. Again HAL came to the rescue with a set of notes and props for her 1:1 teacher while Marla’s own notes were in Braille.

Marla can now for the first time share the written word with her younger brother Julian. She has been writing short stories, which she then prints off for him, it is a bit of a novelty for them both. She can also save those short stories on to a USB stick and take it into school and print them off on the Mountbatten.

Sarah Hornbrook

Marla feels much more independent academically since receiving the HAL. We are very grateful to the MACS Team. Thank you.

Emily Newton and her new Laptop

This is a picture of our daughter Emily, who is 12 years old. Emily has micropthalmia and coloboma in her right eye. The super purple laptop you see her

using is courtesy of MACS. We are so grateful to all the fundraisers for MACS who made this wonderful gift possible. Emily uses her laptop constantly for school projects, presentations, emailing friends, playing games with her friends online, downloading pictures from her camera - the list goes on and on. There was a big hole when her old laptop finally quit co-operating! For Emily it is a non-stop vital piece of equipment. Once again, thank you MACS. Andrew and Alison Newton.

Thank you to all the families who sent their voluntary subscriptions for the year 2008. We would like to thank the following families, friends, businesses and companies for their continued support to MACS. Coote Family (in memory of Mr John Coote) Sharpe Family (in memory of Mr Anthony James Sharp) Hinckley and Burbage Loins Club (in memory of Mr Anthony James Sharp) Earnshaw Family (in memory of Mr Donald Earnshaw) Price Family (in memory of Mr Price) Southern Regional College (donation) Royal Victoria Lodge (donation) Gateshead County Court (donation) Hanko Gardening Services (donation) Farmer Family (donation) DSG Retail Ltd (donation) Ladies of Fordsham & District (donation) Creeksea Caravan Site (donation) Helsby B Bowls Team (donation) Gotelee & Goldsmith Solicitors (donation) Dudley Building (donation) Fordsham Towns Womens Guild (donation) Henke Family (donation) Walkden Family (donations instead of Ellie receiving Birthday Presents) Kingsland Squash & Fitness Centre (donation) Hardisty Family (donation) Stretham & Clapham High School (donation) St Anselms (donation) Capital International (donation) Granny Family (donation) Dulux Paints (donation) Cardinal Maritime Limited (donation) Arrennar Management Services Limited (donation) Little Heath School (donation) Jarvis Family (donation) PSSC Windows Limited (donation) Perpro LW Mills Limited (donation)

MACS Newsletter Summer 2008  

MACS Newsletter Summer 2008