Amy and Friends - Cockayne Syndrome Support Amy and Friends - Cockayne Syndrome Support
























Bertie Butterfly is kindly sponsored by Holly Lodge School for Girls, Liverpool.

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News Archives
Latest News about Amy and Friends from 2007 to 2012
 
 
 
 
 
September 2012 - Sweet angel Taylor-Louise spread her wings and left for Heaven leaving the hearts of her loved ones aching - Aged only 5 years old Taylor fought so hard and is now free to fly - Rest In Peace Taylor-Louise

August 2012 - The first of our siblings was tested to see if they carry the Cockayne Syndrome (CS) gene - This has been a huge breakthrough. For further information on this, you can email jayne@amyandfriends.org

August 2012 - Much loved angel Jayla aged 6 grew her butterfly wings and flew to be with her friends in Heaven - Always in our heart.
August 2012 - Matt (Dad of butterfly Zach) and friend Tim completed a sponsored swim and raised an amazing £2035!! Many, many congratulations to you and thank you for your support!    
August 2012 -Thinking of CS angel Beatriz from Portugal who has left for Heaven aged 12

August 2012 - Our hearts are breaking for the loss of sweet angel Gabi who hassadly left for Heaven - Fly free sweet girl!

August 2012 - Heaven has a brilliant beautiful butterfly......run free, laugh and do everything you have ever wanted sweet Nathan.....until we all meet again...
August 2012 -Thinking of CS angel Beatriz from Portugal who has left for Heaven aged 12

August 2012
- Our hearts are breaking for the loss of sweet angel Gabi who hassadly left for Heaven - Fly free sweet girl!

August 2012
- Heaven has a brilliant beautiful butterfly......run free, laugh and do everything you have ever wanted sweet Nathan.....until we all meet again...
July 2012 - Disability in the family: A brother's story -Part of the Caudwell Children 'Disability In The Family' series; 11-year-old Ben gives a brave and honest account of what it is like to have a sister with a life
threatening illness. His sister, Amy (20), has Cockayne Syndrome; a genetic condition which causes premature ageing.
 
10th July 2012 - Sweet Ryanngave up his brave fight against this illness and flew to heaven to join his friends. Will remain in our hearts forever until we meet again tiger xxxx
July 2012 - Lots of fun had by every one who attended our bingo night.
July 2012 - A huge thank you to Tom Laurie's grandad and his line dancing buddies for raising a huge £555 for Amy and Friends!
  Congratulations for being a finalist in your category and also for winning the New Reality Award at this years Spirit of Merseyside Awards. Please find attached some pictures from the night and below a link to your film feel free to use them in any promotional activity you do.
 
June 2012 – On 1st June Mark Hughes - Dad to earth angel Amy was very proud to run as an Olympic torch bearer! This was his moment to shine and he was chosen for his work in founding Amy and Friends!
June 2012 – Amy was honoured to meet the Duchess of York and Princess Beatrice at the Diamond Jubilee Ball for Caudwell Children.  
June 2012 - We raised an incredible £11,000 (fund matched by Barclay's) at our Amy and Friends Mardi Gras Ball - Thank you to every one who came to support us.
June 2012 - Amy and Friends enjoyed sharing the day with new and old friends face painting/Dancing/playing pass the parcel at our Jubilee party!
May 2012 - 'Inspirational' Amy among guests of honour at charity ball.

May 2012 - A huge thank you to everyone who took part in The Wirral Walk - despite the heat and blisters you did us proud and collectively raised in the region of £1000! WELL DONE!

May 2012 - The wonderful Wendy - Zac's Auntie - who just reached her target of £500 for Amy and Friends! On behalf of our children and families THANK YOU! 
Running with Butterflies

  May 2012 - Our Dads had a wonderful time at their Dads Day outing provided by Amy and Friends - It gave them time to share experiences, bond, reflect and talk about the happy and sad times. Thinking of all of your angels here and in heaven who brought you together as brothers.
April 2012 - A big thank you to Jason who ran the London Marathon for Amy and Friends raising an incredible £932.50!!!! THANK YOU JASON  
April 2012 - Amy and Friends enjoyed spending a few hours at the Royal School For The Blind where we were presented with a cheque raised by the fantastic staff and pupils
April 2012 - Another angel left for Heaven - Rest In Peace Stacie
April 2012 - The stars shine bright tonight for another child her who has gained her wings, fly free Avery
April 2012 - I am sad to say our dear friend Clement aged 24 lost his battle with Cockayne syndrome today.
March 2012 - Carly's school held a 'Carly Day' where a mosaic in Carly's memory was unveiled. Amy and Friends where there to celebrate this day and the whole village had helped to raise money for Amy and Friends!  
March 2012 - So sad to hear that Mélanie from France passed away and has joined her brother in Heaven.
March 2012 – Our sweet friend June from Spain went to join her friends in Heaven aged 5.
Febuary 2012 – A big thank you to Jeans for Genes who are providing AAF with a grant of £25,000 for the launch of a new adventure in the near future!
  January 2012 - A huge thank you to everyone who gave up their time to help out at Burleydam Garden Centre's grotto on the lead up to Christmas.....on behalf of all of our children and families - Amy collected a cheque for £4351.50- here she is with the lovely Tania. Truly grateful for your support! Xxx
December 2011 - Joanne and Jenny Ewing - you have exceeded £8,000 (including Barclays fund match) raised at the Jessica’s christmas ball - thank you wonderful ladies!

December 2011 - A brilliant time had by all at the Christmas party thanks to the wonderful staff at The Bridge Inn - thank you for your recent donation of £410.00 and for your support and donations throughout the year!

December 2011 - A huge thank you to Kris Dawson for £200 received in sponsorship money for the Santa Dash.

December 2011
- Amy and Friends would like to say a huge THANK YOU to our lovely Pukky for her kind donation of £200. This will put to very good use in helping your friends sweet girlie. Xxx

November 2011
– Jayne, Amy and Ami were featured on BBC radio Merseyside talking about Amy and Friends Cockayne Syndrome Support and Children in need. A great interview by all.
November 2011 - A wonderful guy called Don Hamilton - who we have never even met - has decided to trek Everest for us. Don you are an angel on earth.

October 2011 - Today two very special people are ran the 10 mile Bupa Great South Run!! A HUGE thank you to Karen and Steve Sargant (friends of the Laurie family) for helping all our families, we are forever grateful. Steve did an amazing time of 1.33 knocking 8 mins off last year's time and Karen did it in 1.45 knocking 13 mins off last year's time so very pleased.

September 2011 – A wonderful night had by all at the charity night hosted by Ricky Tomlinson – Big thanks to Slapdash and the lovely Justine.  
September 2011 – Lots of our wonderful Mum’s took a few hours out to meet up in London and have some lunch and watch a show – You all certainly deserved it and we hope you had a great time together.

August 2011 – Amaris became a butterfly and flew to Heaven – Thinking of her family today and always!
July 2011 – Our Retreat/Medical conference was bigger and better than ever with families and specialists travelling from far and wide. A great time had by all and counting the days till we are together again!  
  July 2011 – Dads day was a success with our men enjoying a driving experience and a night together! 
June 2011 - Robert Hope Dad of Earth angel Scarlett and his colleagues from R. Swain and Sons climbed the 3 Peak Challenge in 24 hours. They raised a HUGE amount of money for AAF and we are forever grateful.  



June 2011
– Angel Inaya lost her battle with CS aged 1 years old. Fly free beautiful butterfly, thinking of Inaya’s mum Ali, dad Imran, sister Meerab and brother Ibrahim along with everyone else who loved Inaya today and always!

May 2011 – Zach became a shiny bright butterfly aged 3 – Thinking of his wonderful family and friends.

May 2011 – Beautiful Faith joined her brother in Heaven – We are sending strength to their parents Jeanie and Scott.

May – Thank you to all who attended the Wirral walk, vital funds and awareness were raised and we enjoyed the sunshine and smiles with all our friends.

April 2011 – Ernie lost his battle with Cockayne syndrome, sweet dreams lovely boy.

April 2011 – Travis Knowles (sister of butterfly Grace) did a sponsored swim raising over £200 for AAF – Way to go Travis!

April 2011 - What a fantastic night last night at the race night. We raised over £3000, how amazing. All worth it for the amazing children and their families. Wahoo!!!!

We have been lucky to receive amazing grants from Children In Need and Lloyds TSB. We have also met some amazing people who have organised many events for us and some true heroes who have ran marathons, climbed the 3 peaks and our very latest........trekked the Himalayas!!!!

We are happy to report that we are steps nearer getting our specialised clinic for CS and also that we have on board 2 doctors who are helping us immensely. Dr. Shehla Mohammed from Guys and St. Thomas and also Dr. Brian Wilson from Newcastle Institute of Human Genetics.

Our latest trip out was for our siblings and we had a fabulous time in Alton Towers - a huge thank you to Barclays who organised our tickets!
March 2011 - has brought the sad news of our beautiful Carly losing her brave battle - fly Carly and join your friends.
  Febuary 2011 - Amy and Friends received a grand total of £5,000 from Burleydam Garden Centre following their Christmas Grotto Support - a huge thank you to everyone involved with helping us and for Tanya for choosing Amy and Friends as their charity for 2010/2011. 

January 2011
- Happy New Year! Amy and Friends were featured as the Saints on BBC1's Saints and Scroungers - youtube Cockayne Syndrome Amy and Friends part 1 and part 2 and see our beautiful children.

December 2010 - our volunteers worked very hard to raise awareness of Cockayne Syndrome at the Burleydam Garden Centre Grotto where over 2000 people came to see us....Santas did the dash in Liverpool for Amy and Friends!

November 2010 - The Woodland Hotel, Ellesmere Port held raffles to raise funds for Amy and Friends and we all enjoyed our Christmas Party - meeting and greet friends both old and new! Our butterfly trees were launched by the wonderful Carol Claire from Cash for Kids/Radio City.

October 2010 - Amy and Friends were part of the 'Vauxhall Day' and made many new friends! Lee Hughes ran the Edinburgh Marathon and raised £900 - thank you Lee! The Bridge Inn, Port Sunlight held events and raised awareness and funds for us.

September 2010 - The lovely Dear Family gave us £6,509.76 to fund - part-time - our Family Support Worker - Ami Knowles which will bring relief to many of our families.

August 2010 - Amy and Friends received £2,000 from Tesco Charity Fund


July 2010
- Amy and Friends were granted £6,000 from Barclaycard in conjunction with Radio City, Liverpool.

December 2009
- Amy and Friends co-ordinator, Jayne Hughes, was awarded Local Heroes Fundraiser/Volunteer of the year 2009.   
  3 nominees were chosen from the many names put forward. The event was organised by Radio City 96.7 and took place at the Contemporary Urban Centre, Liverpool and guests included Spandau Ballet, The Christians, JLS amongst many others. 
12-15th September 2009 - Amy and Friends co-sponsored and attended a science conference on CS, this was the first of it's kind ever and was also attended by over 40 specialists from across the globe.
During the conference details of the upcoming trials of prodarsan were given - if any families would like further information on these trials they should contact Jayne - jayne@amyandfriends.org or
Mark - mark@amyandfriends.org
The trials are taking place primarily at Boston Children's Hospital under the supervision of Dr. Edward Neilan.
   
  22nd May 2009 - Doctors from all around the UK joined families and existing specialists from the USA and France to raise awarneness of Cockayne Syndrome. We moved mountains and are now begining to receive help from many areas of expertise. Through this event we will be working with these specialists to produce and Cockayne Syndrome Integrated Care Pathway to help standardise the care offered to our children throughout the UK. Our sincere thanks go to all the doctors and researchers for helping to make the event in the House of Lords so successful. Here are some of the pictures from the event. 
11th May 2009 - Amy and Friends were in the news after Marks and Spencers at Cheshire Oaks agreed to support us!! To read the full story
10th May 2009 - Alison Boye ran the Leeds Half Marathon and raised over £2000 for our kids. Here is Alison before her race.
Thanks Alison!!!!!!!!!!!!!!!!!
    26th April 2009 - Mike Elliott ran the London Marathon and raised an incredible £2400 for our kids. Here is our star after the race.
Thanks Mike!!!!!!!!!!!!!
 
 
  26th February 2009 - Katherine has recieved a new bike that was given by her local primary care trust! Go Katherine!!!   
 
22nd May 2009 - Anne Milton MP, Shadow Minister for Health will be joining us for an Afternoon Tea Reception at the House of Lords. 
Friday 28th November 2008 - Amy's wish is coming true......When You Wish Upon A Star have granted this and Amy is travelling down to London to visit Louis Walsh, judges and finalists. She will watch rehearsals and is one very happy girl today so thank you Sam for making her dream come true x
Amy's wish came true and she got to meet her hero Louis Walsh and also the XFactor finalists and other judges. Amy asked Louis to be our patron and he said YES!! 
   
  17th November 2008 - Our Vauxhall boys have worked wonders again and raised £1,000 for our charity! Thanks to Paul Axon, Dave McCoy, Billy Rafferty, Dave Robinson, Paul Tomlinson and all the guys and girls of 'A' shift 'Hard Trim' Thanks - Jayne x 
7th November 2008 - Amy pictured with Mickey and Leo with Mel from Mickey's Boxing Academy who kindly raised money for Amy and Friends by holding a boxing circuit for 4 whole hours - well done and thank you to everyone who took part - in memory of Rebecca Snowden who is sadly missed by our group.  
Tuesday 21st October 2008 - Back by popular demand! Amy and Friends Coffee Morning at the YMCA 9.30 to 11.30 - look forward to seeing you all there!

9th October 2008 - Leeds youngster who is old before his time. Please Click Here to see this Yorkshire Evening Post article.

3rd October 2008 - The Amy and Friends Christmas Card will be ready shortly. Inside the wording reads: Merry Christmas and a Happy New Year. The cards (with envelopes) will cost £1.80 for 5 and £3.00 for 10.Postage and packing will be £1.00 regardless of the size of the order.

If you’d like to order some cards, please make your cheques payable to:

“Amy and Friends” and send it to:
Amy and Friends – Cockayne Syndrome UK
c/o Susie Andrews
46 Castle Street
Cranborne
DORSET BH21 5QA

If you have any questions, give me a call on 01725 551179.

Susie Andrews.

28th September 2008 A big thank you the Yorkshire Post for raising the huge amount of £1001 at the award ceremony.

26th September 2008 - Jayne Hughes and Susie Charles attended an afternoon tea reception at the House of Lords to meet with doctors who specialise in holisitic medicine.

26th September 2008 - Mark Hughes, Angela and Amanda - Leo Castle's mum and aunt - attended an award ceremony in Leeds where a donation was given to Amy and Friends - thank you for organising this Amanda.

Sunday 21st September 2008 Mark Gulvin ran the Windsor half marathon - he ran 13 miles in an amazing 1 hour 50 minutes - CONGRATULATIONS AND THANKS FROM ALL OF US X.

Jack Longman ran the Hoylake 10k also on Sunday - this was his first attempt and how fantastic he was! Approximately 43 minutes and Jack came about 15th out of around 600 runners - WELL DONE, YOU'RE A STAR X

19th September 2008 With great sadness little Rebecca passed away today. Please click here.
Mad Hair Day

  Amy is pictured here receiving a cheque for £200 from Hannah and Jake who are pupils at Somerville Primary School. They held a 'mad hair' day in which pupils came to school with a variety or colours and hairstyles! Thank you children for doing this and for also inviting us to your assembly so that you could learn more about Amy and Cockayne Syndrome.
Friday 29th February 2008 Amy went to the CSA in Birkenhead to pick up a cheque for £578.90 in respect of a cake sale day they held. A BIG thank you to all of those who helped out and to Tracie for organising the event.
Cheers, Jayne x

Thursday 28th February 2008 Amy and Friends were granted use of the bungalow at Claremount School, Moreton, Wirral, to use as a base for their ongoing work. The use of this bungalow will also bring support to the widened special needs community and funding is being sought in connection with this.

Tuesday 26th February 2008 Jayne Hughes and Penny Dear attended a reception held at the House of Commons on Tuesday 26th February. This was held in connection with Genetic Interest Group, MP's and scientists hoping to bring "centres of excellence" to the UK for many rare disorders including CS - the centre of excellence being developed at St. Thomas/Guys Hospital, London. Further information on this will follow in due course.

January 2008 Good news from Dr. Peter Kang - his paper has been accepted and the story of Amy is to be published in summer 2008!!

January 2008 - We are pleased to confirm that Emma Jones and the Wallasey Swimming Club raised a huge amount of £942.50 and this is received with our thanks.

Five huge kisses are being sent up to heaven for 'Little Man' who passed away 16th January 2008. For legal reasons he cannot be named but his wonderful guardian is in our thoughts for the love and care you showed him in his short life of 5 years. London UK. X X X X X

2nd December 2007 – Wallasey Swimming Club did a sponsored swim to raise money for Amy and Friends – Full Story Click Here

November 2007 – Amy visited Karen Winrow, a sports injuries physiotherapist and walked upright for the first time in 5 years – to view this please visit our Youtube Channel

George Jeffrey Dear: 6th June 1998 - 28 February 2007.
"George touched so many hearts. We could never have imagined how many in his too short a life. So many people knew him, even strangers who had met him or people that had heard all about him instantly recognised him to be George.He brought so much joy and pleasure to so many lives"
 

   
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Copyright© 2011 Amy and Friends - Cockayne Syndrome UK Charity Number: 1119746