Sep 1, 2014 12:00 pm
HUB Westminster, London
Launch party for our new website, organised by Jeans for Genes Day.
Sep 19, 2014 9:00 am
Support Jeans for Genes by wearing jeans to raise money to help families with genetic disorders.
Oct 17, 2014 7:00 pm
Art Centre, Bolton School
Three course meal with live demo from Bolton chef, concluding with coffee, chocolates and a raffle.
Nov 22, 2014 7:00 pm
Kilhey Court Hotel, Wigan
Charity auction and raffle profits raised for Phelan-McDermid Syndrome Foundation.
£50 per ticket
For more information, please contact Andrew Kay
Dec 7, 2014 9:00 am
If you’d like to sponsor a team of Santas’ running to raise money for our Family Day in May 2015 please click here.
HO! HO! HO!
Dec 25, 2014 9:00 am
Spread some festive cheer this Christmas and donate to PMSF UK using our new text donation service.
Powered by JustGiving, it’s easy and secure to donate, just text PMSF22 £2 / £5 / £10 to 70070 eg to text £5 send: PMSF22 £5
Thanks for your support and Merry Christmas!
Mar 21, 2015 9:00 am
The “Charlie’s Angels” aka Jane Wilson, Marsha Morris and Kerry Boyle will be running for PMSF UK. Please sponsor us on the link http://www.justgiving.com/Jane-Wilson19
Apr 26, 2015 9:00 am
Hi my name is Kris and I’m doing the London marathon for PMSF UK. Please, please sponsor me via the just giving page https://www.justgiving.com/kris-booth1. Thanks!!
Apr 28, 2015 7:30 pm
Highgate Newtown Big Hall
The show will take place at:
Highgate Newton Big Hall
25 Bertram Street
Tickets are available for £5 from firstname.lastname@example.org
You can also donate at http://www.justgiving.com/owner-email/update/Jade-Iglinsky
May 16, 2015 9:00 am
For more information contact email@example.com
Jun 13, 2015 9:00 am
Gary and Ben Jones are running the Liverpool 5k for PMSF UK and you can choose to #runwithben by visiting Run, Rock ‘N’ Roll – Liverpool
Jun 27, 2015 8:30 pm
Omagh Rugby Club
BBQ and Dance.
For more information contact Trudy Murray
Jul 12, 2015 9:00 am
Wesley and Harvey Ratcliff are riding their bikes from Manchester to Blackpool. To sponsor them, visit: Just Giving – Wesley Ratcliff
Jul 12, 2015 9:00 am
Jul 18, 2015 9:00 am
Josh Newlands and Jack Johnston are running the Junior Spartan in Edinburgh. To sponsor them visit: YouCaring
Jul 26, 2015 11:00 am
The Team George mile are running for PMSF UK in Milton Keynes.
Entry: £5 T-shirts are available at £10
For more information contact Jonathan Stansfield on 07896 425 278
Sep 18, 2015 9:00 am
Nov 7, 2015 9:30 am
The Royal Angus Hotel, Birmingham
Taking place at The Royal Angus Hotel, Birmingham, B4 6HY between 9.30-10.30am
For further info contact firstname.lastname@example.org
Apr 16, 2016 11:00 am
White Post Farm, Farnsfield
Taking place at White Post Farm, Farnsfield, NG22 8HL
For more info contact Victoria email@example.com or 07772 528586
Apr 24, 2016 9:00 am
Simon Birks is running for PMSF UK. To sponsor http://tinyurl.com/go3hssh
May 14, 2016 10:00 am
Martin Mere Wetland Centre
At Marting Mere Wetland Centre, Burscough, L40 0TA
For more info contact firstname.lastname@example.org
Jun 18, 2016 11:00 am
North Coast of Ireland. Taking place at Alley Cats, Coleraine and The East Strand, Portrush. Late afternoon BBQ.
For more info contact Rosie at email@example.com or 07879 436 743
Jul 10, 2016 9:00 am
Rebecca Taylor and friends are running the London British 10km for PMSF UK.
To support them you can donate here: http://bit.ly/1YAxST0
Jul 20, 2016 9:00 am
Taking place at the Caribe Royale Hotel and Convention Center in Orlando, Florida from the 20th-23rd July 2016.
Sep 10, 2016 9:00 am
Andy Lingham will be cycling across the UK in support of PMSF UK.
To sponsor him, visit: http://bit.ly/25gmeSr
Sep 10, 2016 10:00 am
At Drusillas Park, Alfriston, East Sussex. BN26 5QS
Further details to follow. Please register your interest by contacting Kat Pond
Sep 11, 2016 9:00 am
Several people running for PMSF UK so please look out for us on television and Just Giving.
Sep 20, 2016 5:00 pm
Find out more at http://www.thegivingpartner.org/
Oct 9, 2016 9:00 am
Please sponsor two of our trustees, Giles and Penny, who are running a marathon (in two halves!) to raise money for PMSF UK – the Great North Run in Sept and the Royal Parks Half in London Oct 2016. You can sponsor them at http://www.justgiving.com/run4pmsfuk
Linda Whithey will also be running, good luck! https://www.justgiving.com/fundraising/Linda-Withey3
Oct 29, 2016 11:00 am
Burnage Rugby Club
Footgolf competition open to everybody prizes for winners, raffle tickets also available. For more information contact Wes on 07447123848
Nov 12, 2016 9:30 am
St. Chads Queensway, Birmingham
Taking place at The Royal Angus, B4 6HY.
Jan 29, 2017 11:59 pm
The Phelan Lucky T-Shirt Campaign will begin on Monday 16th January, 2017 and end on Sunday 29th January. You will have a limited amount of time to purchase the latest Phelan Lucky 2017 T-shirt and other products. https://www.booster.com/phelanlucky2017
Victoria Feddersen will organise UK orders. Please contact her at: firstname.lastname@example.org
Feb 28, 2017 9:00 am
International Rare Disease Day is on Tuesday 28th February, 2017. Check out their web site for local events to celebrate RARE DISEASE DAY http://www.rarediseaseday.org/country/gb/united-kingdom
or email queries to: email@example.com
Mar 5, 2017 12:00 pm
Also there will be a family event on Sunday 5th March to celebrate Victoria’s year of wearing the Phelan Lucky 2016 T-shirt for 365 days in a row to fundraise for PMSF UK! The event is very family friendly so bring everyone to:
Captain Jacks, Chancery Lane, Retford, DN22 6DF on SUNDAY 5th MARCH, 12-6pm.
To attend please contact Jason Feddersen at: firstname.lastname@example.org
If you are unable to come Jason is also doing a scrap-book where you can write a message to Victoria to say well done. The message can be written via email.
Apr 23, 2017 9:00 am
Alastair McGeoch-Williams is running the London Marathon on Sunday 23 April for PMSF UK.
Please check out his fundraising page at:
May 6, 2017 9:00 am
On May 6th, 2017 Louise & Danny will be doing a sky dive for PMSF UK. Check out their just giving page at: https://www.justgiving.com/fundraising/louise-lowe4
May 20, 2017 9:00 am
Our Family Day is being held on Saturday 20th May, 2017 at Wyre Forest School, Habberley Road, Kidderminster, Worcestershire DY116FA
It’s a great opportunity for all families to get together (including extended family and carers) and spend time together. Families can share stories and experiences and practical information. Take a look at our family day photos in May 2015.
To find out more and register for the family day please contact
Alison Turner: email@example.com
or Kelly Jones Whale: firstname.lastname@example.org
Or click here to read more about our Family Days.
May 20, 2017 9:00 am
On May 20th, 2017 Ana Hurtado, will be completing the Great Wall of China Marathon to raise funds for PMSF UK. The Great Wall of China Marathon is 26.2 miles through the breathtaking surroundings of Tianjin Province and includes 5164 steps of the Great Wall section. The highest point of the course is 492 meters above sea level. Please check out her fund-raising page on: http://bit.ly/2o8n1oK
Jun 10, 2017 9:00 am
Campaign to tell 22 new people about PMS. Photos throughout the process should be sent to email@example.com and posts will begin on the 10th June (our charity’s 3rd birthday) on our new public Facebook page.
Jul 16, 2017 8:00 am
Marc Jones, dear friend of trustees Giles and Penny Bradley, competing and raising money for PMSF UK. Please sponsor: https://justgiving.com/fundraising/marcjonespmsf
Sep 3, 2017 9:00 am
Queen Elizabeth Olympic Park, London
Kat Pond and her son Bastian are participating in Parallel London. It is a fully accessible fun run and free family festival.
Sponsor them here: https://www.justgiving.com/fundraising/katpond
Sep 22, 2017 9:00 am
Have you signed up for Jeans for Genes yet to help children with PMS? You can register for a fundraising pack here and it will take you to a link with PMSF UK a partner with Jeans for Genes. http://www.jeansforgenesday.org/register/
Oct 8, 2017 9:00 am
Rebecca Taylor and Ruth Chadney are running the Royal Parks Half Marathon on Sunday 8th October and fundraising for PMSF UK. http://bit.ly/2xMJ3PX
Nov 11, 2017 10:30 am
Holiday Inn Express Snow Hill, St Chads Queensway, Birmingham, B4 6HY
Nov 21, 2017 9:00 am
Support PMSF UK Regional Family Days in 2018 with an Aviva Community Fund Grant. Voting closes on Tuesday 21st November, 2017.
Nov 30, 2017 11:59 pm
On Tuesday 28th November we are involved in a campaign to raise money directly for PMSF. The UK & Ireland is Region 6 of PMSF and as the largest region IN THE WORLD of PMS Families we would like to raise as much as we can. Please follow the link and donate to Region 6. The page is taking donations earlier so get started and make sure you donate to Region 6 for this friendly competition. https://www.classy.org/campaign/giving-tuesday/c144679
Dec 1, 2017 9:00 am
If you’d like to host a regional day for PMS UK families in 2018 please email Alison Turner: firstname.lastname@example.org
Jan 1, 2018 9:00 am
Regional Family Days in Scotland, Bolton area and Ireland are also being planned.
We will provide more information as it becomes available.
Apr 15, 2018 9:45 am
Preston Park, Brighton, UK
Kat’s son Bastian has a rare chromosome disorder called Phelan-McDermid Syndrome (PMS). It’s so rare that he is 1 in 4 million! PMS affects every aspect of his life. He has mobility difficulties including low-muscle tone, sleep problems, behavioural difficulties, medical needs and he is completely non-verbal. He will need additional support for the rest of his life.
Kat hasn’t been running for very long. She started running in 2016 to help lose weight and since losing 6½ stone with Slimming World, Kat has managed to maintain a healthy weight.
She has been plagued with niggles and injuries and broke her foot last summer and has constant knee pain. With April fast approaching she continues to feel like it’s 50/50 that she will complete the marathon. But she is a determined woman and you know what they say about determined women!!!
Please help Kat to make each mile a little easier by sponsoring her amazing challenge.
Kat is running for PMSF UK. To sponsor her and make a difference to our PMS families please click here.
Thank you in advance for your support – go Kat!
May 20, 2018 11:30 am
The Springboard Project, 52 Hurst Road, Horsham, West Sussex, RH12 2EP, UK
Our South Regional Family Day is being held on Sunday 20th May 2018 between 11.30am and 5pm at The Springboard Project.
Lunch and snacks will be provided.
The centre is a 4 minute walk from Horsham Station. There are a few parking spaces at the front but plenty of parking on the nearby residential roads and at the Pavilions Leisure Centre across the road.
For more information about the venue, please visit http://springboardproject.com/horsham-centre
This event is FREE but booking is essential and places are limited.
For further details please contact Kat Pond on 07825 346 945 or email email@example.com
Jun 2, 2018 10:30 am
Yorkshire Wildlife Park, Warning Tongue Lane, Bessacarr, Old Cantley, Doncaster, DN4 6TB, UK
Our North Midlands Regional Family Day is being held on Saturday 2nd June 2018 between 10.30am and 4pm at The Yorkshire Wildlife Park.
Please bring your own lunch or take advantage of the cafes in the park.
Changing facilities and animal viewings are provided.
For more information about the venue, please visit http://yorkshirewildlifepark.com
For further details or if you would like to book a place please contact Victoria Feddersen by email firstname.lastname@example.org
Jun 2, 2018 6:00 pm
Alperton Community School, Stanley Avenue, Wembley, Middlesex, HA0 4JE
Please join us between 6pm – 9.30pm for the Brent Cultural Fusion Music Festival organised by SEEEFI at Alperton Community School, Stanley Avenue, Wembley, Middlesex, HA0 4JE.
PMSF UK Families have been invited for dinner and music. For free tickets please contact Alison Turner via email – email@example.com
For more information about the event, please click here
Jul 18, 2018 9:00 am
Taking place between 18-22 July 2018 at the Embassy Suites DFW Airport North in Grapevine, Texas.
Please click here for more information.
Sep 7, 2018 8:00 am
Holiday Inn Express - Snowhill, Birmingham
On 7th September 2018 between 8am – 9am, Tanith and Darren Sherwood, parents of Harrison who has PMS, along with one of their friends and six of Tanith’s work colleagues are abseiling 200ft from the top of a 20th storey building the Holiday Inn Express Snowhill in Birmingham. They are raising funds for PMSF UK and helping to raise awareness of PMS.
Please show your support and visit Tanith’s Just Giving page to donate and to help this fearless team of abseilers reach their £2,000 goal. Please give what you can. A little donation from many adds up!
If you would like to donate via Just Giving please click here – thank you for your support.
We would like to thank Tanith and Darren Sherwood, friends and colleagues for raising money for our special charity and the funds will go a long way in supporting families affected by PMS.
Good Luck from everyone at PMSF UK – we wish you a safe trip down!
The pictures below show what the team are up against!
Sep 14, 2018 6:00 pm
Highest peaks of Scotland, England and Wales
Rachel Todd’s daughter a special girl called Ruby has recently been diagnosed with Phelan-McDermid Syndrome. This was a huge shock to the whole family. They all knew Ruby was a special child but didn’t realise how special. There are only 200 people in the UK & Ireland that have been diagnosed with Phelan-McDermid Syndrome (PMS).
After Ruby’s diagnosis Rachel and her family set about finding out as much information as they could about this rare syndrome. Rachel found information online and also discovered PMSF and PMSF UK and then joined their support network.
Rachel and a team of friends wanted to raise money for PMSF UK to support the charity that will be there to help and support her, her family and their special girl Ruby on their journey.
They have decided to take on the National Three Peaks Challenge which involves climbing the three highest peaks of Scotland, England and Wales, aiming to complete this challenge within 24 hours. They will be starting Ben Nevis early evening on Friday 14th September 2018. The total walking distance is 23 miles and the total ascent is 3064 metres.
We are delighted that you have chosen to fundraise for PMSF UK and the money you raise will go directly to the families affected by PMS.
If you would like to read more about their upcoming journey please visit the Three Peaks Challenge website by clicking here.
If you would like to sponsor these intrepid mountaineers, please visit Rachel’s Just Giving page by clicking here to donate and to help this fearless team reach their £500 goal. Please give what you can. A little donation from many adds up!
Good Luck to you all from everyone at PMSF UK – we look forward to being able to share your experiences and photos on our Facebook page!
Sep 21, 2018 9:00 am
Taking place between 21-23 September 2018 at La Paz University Hospital in Madrid, Spain.
Sep 21, 2018 9:00 am
Jeans for Genes Day is the annual fundraising campaign for Genetic Disorders UK, the national charity that supports individuals and families affected by a genetic disorder.
Monies raised on Jeans for Genes Day fund the work of Genetic Disorders UK and provide grants to organisations for projects that aim to transform the lives of children with genetic disorders.
To see how you can get involved and to help raise money to make a difference to families affected by genetic disorders please click here for more information.
Sep 29, 2018 10:30 am
Brockhole on Windermere, The Lake District Visitor Centre, Windermere, Cumbria, LA23 1LJ
Our Regional North Family Day is being held on Saturday 29th September at Brockhole on Windermere, The Lake District Visitor Centre, Windermere, Cumbria, LA23 1LJ.
Parking, activities and lunch will be provided.
For more information about the venue, please visit http://www.brockhole.co.uk
For further details or if you would like to book a place please contact Penny Bradley (by no later than 8th September) by email firstname.lastname@example.org
Oct 22, 2018 11:59 pm
On 22nd October it’s International Phelan-McDermid Day!
Please help us support families who are affected by Phelan-McDermid Syndrome and spread awareness of this rare genetic condition.
Thank you for your support.
Oct 31, 2018 9:00 am
Victoria has very recently become aware of PMSF UK as a very special little girl, the daughter in a family very close to her has been diagnosed with Phelan-McDermid Syndrome.
Victoria has been so touched by this that she wanted to do something amazing to show her support. She has decided to walk 1000 miles in 2018 and to also raise money at the same time for PMSF UK.
If you would like to join Victoria on one of her walks please contact Penny Bradley via email@example.com in the first instance.
We would like to thank Victoria in advance for raising money for our special charity and the funds will go a long way in supporting families affected by PMS.
If you would like to donate via Just Giving please click here – thank you for your support.
Its amazing to see that you have exceeded your target already and we are not even in September yet! Just under 200 miles to go! Please continue to give what you can. A little donation from many adds up!
Good Luck Victoria – nearly there!
Nov 17, 2018 10:00 am
The Holiday Inn Express Snow Hill, 1 Snow Hill Plaza, St Chads Queensway, Birmingham, B4 6HY
The PMSF UK Annual General Meeting (AGM) will take place on 17 November 2018 between 10.00am – 11.00am.
Nov 20, 2018 12:00 am
Please vote for PMSF UK to help us be in with a chance of receiving a grant from the Aviva Community Fund. This would really help to support our upcoming PMSF UK & Ireland Family Day on the 18th May 2019.
Voting is now OPEN and will close on TUESDAY 20TH NOVEMBER 2018.
Please click the link below to vote. Thank you in advance for your support!
Nov 27, 2018 11:00 am
The Aviva Community Fund winners & finalists will be revealed!
We are hoping PMSF UK will either be winners or finalists!