Charity

FOP Friends
FOP Friends (Friends of Oliver) is a charity set up to help Oliver and other people affected by FOP. Fibrodysplasia Ossificans Progressiva (FOP) is one of the rarest and most disabling genetic conditions known to medicine, causing bone to form in muscles and other connective tissues such as tendons and ligaments turning otherwise healthy people into human statues. A healthy mind locked inside a frozen body. The condition is so rare (1 in 2,000,000) that little commercial interest exists in finding a cure so Oliver and his friends need your help. Please be a FOP Friend by supporting our charity.


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Millie's page - Finding a cure for FOP

Fundraisers: 
Lorraine Turner

My page: http://uk.virginmoneygiving.com/team/MillieFOP

 

FOP FRIENDS of Millie

 

Hello my name is Millie I am 5 years old and I live in Framlingham Suffolk. I have a big brother Ethan and a baby sister Esther who I love to play with. I like going to school and playing with my friends, I just have to be more careful and try not to fall or bump myself. Everyone thinks I am a smiley little girl and I am determined to stay that way. I just want to play like all other children. Hopefully one day I won't have to ask mummy why I can't move like other boys and girls, because the researchers will have found a cure for me and my FOP friends.
We got the devastating diagnosis that Millie had FOP back in October 2013 when she was just 3 years old, something I thought we could never deal with. After time and support from FOP friends and the FOP community we do see hope but we need to continue raising awareness and fundraising to find that cure! 
(Link to Millie's virgin page) 
Is that OK for the website? Feel free to suggest any changes you think of
I will send photo / s in a bit

Hello my name is Millie I am 6 years old and I live in Framlingham Suffolk. I have a big brother Ethan and a baby sister Esther who I love to play with. I like going to school and playing with my friends, I just have to be more careful and try not to fall or bump myself. Everyone thinks I am a smiley little girl and I am determined to stay that way. I just want to play like all other children. Hopefully one day I won't have to ask mummy why I can't move like other boys and girls, because the researchers will have found a cure for me and my FOP friends.

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On 1st October 2013 my beautiful, happy and smiley daughter Millie who was just 3 years old was given the clinical diagnosis of Fibrodysplasia Ossificans Progressiva (FOP) something I thought we could never deal with. After time and support from FOP friends and the FOP community we do see hope but we need to continue raising awareness and fundraising to find that cure! 

FOP is one of the most rarest and most disabling genetic conditions known to medicine, causing bone to form in muscles, tendons, ligaments and other connective tissues. Bridges of extra bone develop across the joints, progressively restricting movement and forming a second skeleton that imprisons the body in bone.

FOP progression is variable and unpredictable. One day a person may be able to turn their head or move their arms, the next day they become frozen forever in a locked position. FOP can significantly shorten the life expectancy of sufferers.

Research is currently being conducted at the University of Oxford and the University of Pennsylvania, School of Medicine. FOP research will not only help find a cure but will also benefit other more common bone-related conditions from discoveries made (fractures, Osteoporosis, hip replacement and other forms of heterotopic ossification that occur in trauma and burn victims)

Having to type this about my daughter is just devastating and it makes it all real again. This is a nightmare that is still there every morning, please help Millie and others in finding a cure for this cruel disease. We have been overwhelmed with Love and Support and I would like to thank everyone so much - Lorraine, Millie's mum xxx

 

Any donations will be quickly processed and passed to the Friends of Oliver charity (FOP Friends) where all money raised goes to the Research Team to help find a cure

Virgin Money Giving is a not for profit organisation and will claim gift aid on a charity's behalf where the donor is eligible for this. We really appreciate all your support and thank you for any donations.

Recent donors

13.12.16 Merry Christmas to all my friends and family. Please accept this message and donation as my families Christmas card to each of you xx

29.04.16 Instead of gifts for my 40th birthday we had a collection at my party for Millie's fund - thank you everyone X

29.04.16 Clothes Swap, Stratford organised by Beverley Chambers - thank you everyone who helped out, donated raffle prizes and attended x

29.04.16 Charity Football Match, Framlingham organised by Rob and James Rogers, food donated by Fram Railway- thank you to everyone who attended and your amazing generosity for Millie x

24.04.16 Wickham Market U10's and East Bergholt U10's supporting fun feet 23rd April

12.04.16 You're such an inspiration Lorraine. What an amazing Mummy! Mx

09.02.16 Last few pounds from the loom band sales

09.02.16 Donations from the Christmas draw Railway Inn Framlingham

07.12.15 My charity of choose instead of Christmas cards

20.11.15 With love from Picture Perfect Studio, Framlingham. Thank you to all those who helped us to donate.

08.10.15 Car boot sale at Wickham Market thank you to everyone involved

11.09.15 Good luck with all your fundraising, best wishes Jasmine Sandersons family x

03.09.15 Money raised from bric a brac, tombola's and tea/coffee & cakes in Orford.

16.06.15 Tina Clifton nominated Millie's fund, FOP Friends of Millie for a charity Bingo night at Wickham Market Village Hall. Thank you so much an amazing amount xxxxxx

22.03.15 Money from left over clothes swap clothes sold to 'cash for clothing'

15.03.15 Money raised from the clothes swap at Orford sports & social club

25.02.15 The Chilli quiz team donated their winnings to Millie's fund, thank you Emma, Chris, Gemma, badger, Tim and Sarah Jane xxxx

21.01.15 Sales of raffle tickets for Frozen Dolls and Reindeer food, thanks to Donna Vince for donating these for Millie's fund

23.12.14

22.12.14 Money raised from Christmas jumper day and children in need Harry Potter day at Today Magazines xxx

22.12.14 Wanted to show my support for this and wish you a Merry Christmas

21.12.14 Monies for Frozen draw

05.12.14 Instead of sending xmas cards this is for Millie's fund instead xx

05.12.14 My Christmas card donation for 2014 to wish all my family and friends a good one and to help make a tiny difference to a charity that supports special children

07.11.14 Donation from clothes swap at Orford Sports Club

£9,836.10

Running total

Total raised incl. Gift Aid:
£10,104.13
Total donors:
132
Last donor:
Helen
13.12.16  
Offline fundraising:
£0.00
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