Julie Hopwood would like to say a huge thankyou to everyone who attended her 50th birthday party. Instead of everyone giving presents she asked for donations to FOP research and raised a brilliant £560.
Good luck to Rachel Winnard who is shaving all her hair off and her Uncle Marc for getting his body waxed this evening. The pair are doing it to raise much need money for two charities FOP Research and Christies Hospital in Manchester. Please see their giving page
A massive thanks to James Campbell from Hartlepool for riding the coast to coast bike ride to raise much needed funds. He also did very well as he completed his ride in just under 8 hours beating his target of 9 hours by a good margin.
Sinead did it, she got to the top of Kilimanjaro and has raised nearly £40,000 on her Virgin Giving Page for FOP research. She will keep it open until March, as we are still waiting for the “Big One”.
Thanks to everyone who has supported us.
Sinead on the top of Mount Kilimanjaro.
Amazing awareness raised in the irish world newspaper
The Daily Mail and the Mirror newspapers.
You can show support on her Virgin Giving site.
Our story was in two major tabloids in the UK one yesterday one today.(links below)
Sinead my daughter is off to climb Kilimanjaro Thursday to raise money for FOP research. She has raised over £32,000 so far (her giving link below) and we are hoping with all the media coverage that more will come in. Will let you all know how it goes.
Daily Mail Article
Please give Sinead support and make a donation on her giving page. Good luck Sinead from all the FOP community we all really appreciate what you are doing for ALL FOP sufferers.Every donation really makes a difference, we are only half way to our total this year to keep all the research team working hard next year. With FOP being so rare there are only a small amount of families trying to raise funds.
Kilimanjaro, the highest mountain in Africa and fourth highest of the Seven Summits, is considered the tallest freestanding mountain in the world, rising 15,100 feet (4,600 meters) from base to summit.
Kilimanjaro is composed of three distinct volcanic cones: Kibo 19,340 feet (5,895 meters); Mawenzi 16,896 feet (5,149 meters); and Shira 13,000 feet (3,962 meters). Uhuru Peak is the highest summit on Kibo’s crater rim.
Today myself and Sinead went to a local primary school St Francis of Assisi Treadgold Street, W11 4BJ where they have raised an amazing amount of £250 for FOP research a big thank to all the Staff, Students and Parents and anyone else who contributed.
I also want to thank Pauline Hannington O’Hara and Maureen Cain who work there and made the school aware of FOP and the need for money to keep research going, both are really focussed on getting the word out there into the local community. Also thanks to Ciara for organising the assembly, where we got to talk about FOP to the children explaining that they will probably never come into contact with anyone else in their lifetime that would have FOP because it is so rare. Obviously with small children you don’t want to go into too much detail of the condition. When we asked if anyone had heard of FOP only one child in the hall full of children said she had heard of it and her dad was a Doctor!
Also not long now until Sinead treks Kilimanjaro she leaves on the 1st August and is tirelessy training down the gym and going on mega walks.
Sinead is not only climbing Mound Kiliminjaro but she has just ran the London Marathon, amazing support for a sister Seanie.
Well done to Rachel Winnard, janice Hopwood and Julie Hopwood for compleating the 10k run in Mancherchester.
A massive thanks to Lynne Heraghty (friend on Dylan Scott) for compleating the 2013 Ignis Asset Management Womans 10k Event. Please see her giving page www.virginmoneygiving.com/LynneHeraghty
Dylan with his sister Rachael from Stirling raising awareness.
Chris and Helen Bedford Gay have been busy with fundraising. The family has recently had a car boot sale and a Coffee morning at Rochdale town hall.
Jasmine age 6 with FOP took part in another fundraiser in Hartlepool. It was an amazing show and its great to see Jasmine and her big sister Sienna getting more and more confident on the stage. FOP research was choosen as one of two charities and the night raised £600 for FOP research. Thanks to her performing arts teacher Miss Toni and all the amazing children and families.
Sienna and Jasmine right at the front.
I would also like to thank Micheal Mccabe for raising a brilliant £300 for compleating a Half Marathon and Holy Trinity Slimming world in Hartlepool for raising a brillian £225. We really appreciate everyones help and cant thank them enough.
Sheryll, chairman of FOP Action, did a brilliant job of raising awareness of FOP in the UK through her BBC Radio West Midlands interview with Nick Conrad. You can listen to the interview by clicking here [Forward to 2 hours 50 mins]. A big thank you to Sheryll for being brave enough to talk about FOP on the air.
Please everyone raise awareness today. We are making real progress with research and together last year we raised the largest amount ever raised for FOP research at Oxford University. We still have a long way to go this year but if we all work together we CAN make a difference.
UPCOMING EVENTS AND OLIVER IN THE LOCAL PAPER.
Sinead Nammock is not only Climbing Mount Kilimanjaro to raise much needed funds for research she is also taking part in the Bupa London 10k run for FOP Research. Please see her giving page and PLEASE show your support.
Show your support please visit the upcoming event
Vide Grenier for FOP ACTION/FOP FRANCE
On Saturday March 23rd, we held our first ever car boot sale in France for FOP ACTION/FOP FRANCE.
We received many kind donations of Bric and Brac, freshly baked croissants from the Village Bakery and homemade scones. Friends worked hard to support the event and a lot of fun was had along the way.
Cream teas and baguettes were served and Gail Simcox, Richard Simcox’s wife travelled up to see us and support the event.
Awareness and a whopping 500 euro’s for FOP Research.
Thanks to everyone who supported us.
Sheryll and Lucy.
ANOTHER GREAT DONATION FROM FOP FRANCE OF 5,840 EURO’S.
Thankyou so much FOPFRANCE for the amazing continued support.
Jasmine age 6 with her big sister Sienna. Well done to my lovely Jasmine who got an award for her courage and postive behaviour, she was nominated by her performance arts teacher. She really does deserve it as she does stay positive and doesnt let her resrictions get in her way. We where over the moon that she was nominated. Jasmine has recently had other support in raising money for research. St Hilds School recently raised over £600. Jasmine has a little friend Hanna Kennedy who is in her class at school, her mum works at St hilds and asked if money could be raised for FOP research.Many thanks to Leanne and Suzanne and all the children that helped raise the funds we really appreciate the support. Recently my friends mam Janet Coulson had a 65th birthday/retirement party and asked everyone for a donation for FOP research instead of presents. Thankyou so much we really didnt expect such a kind gesture. Thankyou also to Erin Rose Nicolson, Erin goes to Performance Arts with Jasmine, she has been selling cakes at school to raise funds for research. Thankyou Erin for wanting to help Jasmine.
Love Kelly x
Hi everyone, well its nearly the end of March and some brilliant fundraisers have taken place already.
Please see the brilliant friends of Oliver website to see the latest fundraising
Also a massive thankyou to more friends of Oliver Carlos and Tom for running the Liverpool Marathon for FOP.
The Maxilla FOP Fundraiser raised an amazing amount of £3,175 for FOP research. It was a brilliant night
enjoyed by all who attended. Thanks to Mick Murphy, for organising it and the Maxilla Club for giving us their venue and DJ for free.
See the amazing Climbing Kili for a Cure for FOP Virgin Giving Page Only five months to go to Sineads Kilimanjaro climb, please show your support.
Seanie, Sinead with mum Marian.
Well done Tom and Imi for running like the wind for FOP Research. Hope you are both feeling rested now and have had a good rest. We are up to £700 approx, which is just brilliant. Thank you to all our lovely friends and family who have so kindly and generously donated.If anyone would still like to sponsor Tom and Imi and they have any pennies left before buying Easter eggs and going on Easter hols, we would be happy to have some for our research fundraising for FOP. Thanks again everyone. We are getting closer to the cure everyday. Love Sheryll, Lucy Tom and Imi xxxx
Please see Tom and Ami’s Virgin Giving page
Thankyou Ashley for raising awareness in the UK and showing people how determined you are as you don’t let anything get in your way.
You can see some of the article on Closer online
Also Elle magazine features FOP as an illustrator after watching Louise Wedderburns documentary The Human Mannequin is raising money for research.
More latest fundraising coming soon.