PMSFUK - Phelan McDermid Syndrome Foundation UK

Past Events

Mike Harrison Master Class

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.

London Santa Run

Dec 7, 2014 9:00 am

London

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!

Text to donate to PMSF UK this Christmas!

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!

Junior Spartan

Jul 18, 2015 9:00 am

Edinburgh

Josh Newlands and Jack Johnston are running the Junior Spartan in Edinburgh. To sponsor them visit: YouCaring

Team George Mile

Jul 26, 2015 11:00 am

Milton Keynes

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

South East Family Gathering

Sep 10, 2016 10:00 am

East Sussex

At Drusillas Park, Alfriston, East Sussex. BN26 5QS
Further details to follow. Please register your interest by contacting Kat Pond

Great North Run

Sep 11, 2016 9:00 am

Several people running for PMSF UK so please look out for us on television and Just Giving.

Footgolf Fundraiser

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

AGM

Nov 12, 2016 9:30 am

St. Chads Queensway, Birmingham

Taking place at The Royal Angus, B4 6HY.

Family Event

Mar 5, 2017 12:00 pm

Retford

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: jfedd@hotmail.com
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.

PMSF UK & Ireland Family Day

May 20, 2017 9:00 am

Kidderminster

Our Family Day is being held on Saturday 20th May, 2017 at Wyre Forest School, Habberley Road, Kidderminster, Worcestershire  DY116FA
www.wfs.worc.sch.uk
 
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: alisonjaneturner@hotmail.com
or Kelly Jones Whale: kellyjoneswhale@googlemail.com
 
Or click here to read more about our Family Days.

Great Wall of China Marathon

May 20, 2017 9:00 am

China

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

#Tell22About22

Jun 10, 2017 9:00 am

UK

Campaign to tell 22 new people about PMS. Photos throughout the process should be sent to social@pmsf.org.uk and posts will begin on the 10th June (our charity’s 3rd birthday) on our new public Facebook page.

UK IronMan

Jul 16, 2017 8:00 am

Bolton

Marc Jones, dear friend of trustees Giles and Penny Bradley, competing and raising money for PMSF UK. Please sponsor: https://justgiving.com/fundraising/marcjonespmsf

PMSF UK Fundraiser

Nov 30, 2017 11:59 pm

UK

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

More Regional Days are being planned!

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.

Kat Pond’s Brighton Marathon Challenge 2018

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!
 

South Regional Family Day

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 kat@teampond.co.uk
 

North Midlands Regional Family Day

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 victoriafeddersen@gmail.com
 

London Regional Event – Brent Cultural Fusion Music Festival

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 – alisonjaneturner@hotmail.com
 
For more information about the event, please click here

Brave abseilers raising money for PMSF UK!

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!

Not One, not Two, but Three Peaks Challenge!

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!

PMSF European Conference 2018

Sep 21, 2018 9:00 am

Madrid, Spain

 
Taking place between 21-23 September 2018 at La Paz University Hospital in Madrid, Spain.

Jeans for Genes Day 2018

Sep 21, 2018 9:00 am

UK


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.

Regional North Family Day

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 penny.j.bradley@btinternet.com
 

International Phelan-McDermid Day

Oct 22, 2018 11:59 pm

Worldwide

 
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.
 

Victoria Lawrence is aiming to Walk 1000 miles in 2018!

Oct 31, 2018 9:00 am

Peterborough, UK

 
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 social@pmsf.org.uk 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!

Kat Pond’s London Marathon Challenge 2019

Apr 28, 2019 10:00 am

London

 
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.
 
Last year Kat took part in the Brighton Marathon and completed the course in just under 6 and half hours.
 
Kat has been training hard over the last 5 months in preparation for the London Marathon which is being held on Sunday 28th April. Kat will be running and raising money for PMSF UK. She has already smashed her initial target of £2,000!
 
Please help Kat to make each mile a little easier by sponsoring her amazing challenge.
 
To sponsor her and make a difference to our PMS families please click here.
 
Thank you in advance for your support – go Kat!

PMSF UK & Ireland Family Day 2019

May 18, 2019 10:00 am

Brookfield Primary School, Chester Road, London, N19 5DH

 
Our PMSF UK & Ireland Family Day is being held on Saturday 18th May 2019 at Brookfield Primary School, Chester Road, London, N19 5DH.
 
If you would like more information about Brookfield Primary School, please follow the link. www.brookfield.camden.sch.uk
 
Our Family Day’s are a great opportunity for families, including extended family and carers to spend time together. Families can share stories and experiences and practical information. If you would like to read more about our Family Days please click here.
 
To find out more and to register, please contact Alison Turner: alisonjaneturner@hotmail.com
 
 

See upcoming events