Previous Events
PMSF and PMSF UK make an appearance on the BBC!
The 22nd of October 2021 was Phelan-McDermid Syndrome Awareness Day (PMSAD).
Kings College Chapel at the University of Cambridge was illuminated green to celebrate Phelan-McDermid Syndrome International Awareness Day 2021.
To read the BBC article, please click here.
PMSF UK launches this year’s Seasonal Sweatshirt!
Date: Wednesday 25th October 2023
Our Seasonal Sweatshirts are now available to purchase via our online shop. https://www.pmsf.org.uk/shop
This year they are available in black, in both adults and childrens sizes and has elasticated wrists. Adults are priced at £20 and childrens £15.
They are available for Adults in Small (36/37"), Medium (38/40"), Large (41/43"), XLarge (44/46"), XXLarge (47/49") and for Children in the following age ranges, 3-4 (26"), 5-6 (28"), 7-8 (30"), 9-11 (32"), 12-13 (34"), 14-15 (36").
Please note, chest sizes are shown in brackets.
To pre-order yours, please visit our online shop at https://www.pmsf.org.uk/shop
We will be taking pre-order payments up until 13/11/23 and we are aiming to post your order to you during the last week in November.
Many thanks for continuing to support our special charity.
PMSF UK launches this year’s Seasonal Card!
Date: Wednesday 25th October 2023
Our Seasonal Cards are now available to purchase via our online shop. https://www.pmsf.org.uk/shop
They are available in packs of 10, complete with envelopes, priced at just £5.
Many thanks for continuing to support our charity, which will be 10 years old in June 2024!
The Bliss Phamily are fundraising for PMSF UK!
Date: September / October 2023
A little while ago, Ben said to his parents that he wanted to raise money for the Phelan-McDermid Syndrome Foundation in honour of his sister Isobel who has PMS.
Inspired by a friend's fundraising, the family have decided to walk, cycle or wheel 22km by 22nd October 2023. This coincides with International Phelan-McDermid Syndrome Awareness Day which takes place every year on the 22nd October.
The Bliss family and PMSF UK would love it if you could spare a pound to sponsor them. Please click here to visit their Just Giving page. More importantly please spread awareness to make more people aware of the condition.
PMSF UK celebrates its 9th anniversary!
Date: Saturday 10th June 2023
PMSF UK has grown to just over 300 families and have become a supportive inclusive community across the UK & Ireland.
Thank you so much for your support by raising awareness, fundraising and being there for our families.
Craig is hoping to complete the London Marathon for the first time whilst supporting PMSF UK!
Date: Sunday 23rd April 2023
Craig is running the London Marathon for the first time and has chosen to run for PMSF UK as the charity is very close to Craig's heart, as one of his closest friends Charlie has Phelan-McDermid Syndrome (PMS).
If you would like to make a donation please visit Craig's Just Giving page https://tinyurl.com/mwv659es
A big thank you in advance to Craig for taking on this big challenge, hoping to run just over 26 miles!
Sean successfully completes tandem skydive for Willow and PMSF UK!
Date: Saturday 24th September 2022
Sean Farrell has successfully taken part in a tandem skydive at 15,000ft on Saturday 24th September in Salisbury.
His niece Willow has Phelan-McDermid Syndrome and Sean wanted to do something to support Willow as well as PMSF UK.
So far, Sean has managed to raise an incredible £2,500, which includes a very generous donation from Sean’s employer, HSBC.
Thank you to Sean for taking on such an daring challenge and to the generosity of everyone who has donated too.
There’s still time to make a donation by visiting his Just Giving page. https://tinyurl.com/43hptzts
September 2022 Award Applications
Date: Thursday 1st September - Friday 30th September 2022
We are now inviting applications from our PMSF UK registered familes for our September round of awards. Please click here for more information about our awards programme.
To apply for an award, please download and complete our application form which can be found by clicking here. Please return to: awards@pmsf.org.uk.
The closing date for applications is Friday 30th September 2022.
Regional family day get-together for South of England families
Date: Saturday 30 July 2022
Our regional rep Kat Pond hosted our South family day at the Springboard Project in Horsham, West Sussex.
15 families attended from all over the South of England. The children enjoyed playing in the two sensory rooms, the role playing room and the craft room and of course the huge garden, complete with a mini maze.
After everyone enjoyed lunch in the garden together, families were treated to an al fresco performance of sensory storytelling of The Wizard of Oz by Head2Head Sensory Theatre.
Everyone enjoyed the well overdue meet-up and were blessed with truly wonderful weather too!
Phillip & Alex go skydiving for Bastian and PMSF UK!
Date: Sunday 24th July 2022
On Sunday 24th July 2022, Phillip and Alex Pond took part in a skydive at the Headcorn Aerodrome, near Ashford in Kent to raise money for PMSF UK.
Dad Phillip and Alex, big brother to Bastian have chosen to raise funds for PMSF UK as Bastian has Phelan-McDermid Syndrome. The family wanted to give something back to PMSF UK as the charity have been supportive to both Bastian and his family.
Speaking after their successful skydive, Alex said "it was a great experience" and Phil said "it was an amazing experience, all the better for being able to raise money for such a worthy cause but I think I'll keep my feet on the ground... for a while...".
So far they have received lots of donations currently totalling £2,240. If you would like to donate, please click here to visit their Just Giving page.
Peak District 50km Ultra Challenge 2022
Date: Saturday 9th & Sunday 10th July 2022
On Saturday 9th and Sunday 10th July 2022, Heather Hodson and her parents Steve and Dawn Lamin completed the Peak District 50km Ultra Challenge in 13 hours. Heather’s daughter Mollie was diagnosed with Phelan-McDermid Syndrome (PMS) in April 2021. It was a scary time for Heather and her family and they had so many unanswered questions about the condition. After a little research they became aware of PMSF UK. Recently Heather got in touch to say “We are so grateful to PMSF UK for all the support and guidance you offer to not only our family but to all families affected by the syndrome”.
Between them they have raised over £5,300 which is truly amazing. Heather has been instrumental in supporting PMSF UK since her daughter’s diagnosis. Recently she nominated PMSF UK to receive donations as part of a specially organised golf day for both her work colleagues and clients. The event raised £1400, with Castlegate Financial Management making a generous donation too.
If you would like to make a donation to help us in continuing to support families affected by Phelan-McDermid Syndrome, please click here.
Regional family day get-together for Northern Ireland/Ireland families
Date: Saturday 02 July 2022
Our regional rep Rosie Bovaird hosted our Northern Ireland/Ireland family day in Portstewart on the North Coast in County Londonderry, Northern Ireland.
After a couple of years of families being unable to meet due to Covid restrictions, they were delighted to hear Rosie was organising a well overdue get-together. It was a perfect opportunity for families to meet up, spend time together and share their stories.
With the sun shining, the families spent time together chatting and having a good catch-up. Shortly after it was time for all families including siblings to make their way to Benone to spend some time in a heated pool before walking to the beach for a refreshing ice cream! Families then finished the day with a BBQ back in Portstewart.
With everyone successfully fed and watered the families made their way home happier and more content knowing that the PMS family are there for each other.
PMSF UK is 8 years old!
Date: Friday 10th June 2022
Some days it feels like the year has been looong and others like it has flown by!
As always, our trustees and regional reps have supported our community, and our community and their families and friends have supported us.
We’re emerging from online contact and starting to see each other again in person. Two regional gatherings in the past year and more planned soon. We’ve worn fab Christmas merchandise, fundraised in so many innovative ways, Shone Green to raise awareness and now we will wish ourselves ‘Happy Birthday’ wearing our new ‘GENES’ merchandise!
Let’s make sure more people know about Phelan-McDermid Syndrome by our 9th birthday!
Matthew Chambers cycles for Harrison and PMSF UK!
Date: Sunday 29th May 2022
On Sunday 29th May 2022, Matthew completed a 100 mile bike ride in London. He managed to raise £930 for PMSF UK. Matthew chose to raise money for PMSF UK as his cousins son Harrison, who is nearly 10 years old has Phelan-McDermid Syndrome.
During his 100 mile bike ride, Matthew took in many sights of London as well as views of the Essex countryside.
Thank you goes to both Matthew for supporting PMSF UK and to everyone who donated too.
All donations make a difference in supporting our families.
Rare Disease Day 2022
Date: Monday 28th February 2022
Rare Disease Day 2022 takes place on 28th February 2022 (the last day of February each year). The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.
The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.
The Phelan Lucky Campaign 2022 is well underway!
Date: Sunday 2nd January 2022 - Sunday 23rd January 2022
Phelan Lucky is an annual campaign that raises funds and awareness of Phelan-McDermid Syndrome (PMS). It has become the Phelan-McDermid Syndrome Foundation's (PMSF's) top fundraising event, whilst increasing awareness of PMS on a global scale. To date 41,000 Phelan Lucky T-Shirts have been sold (campaign started in 2014). They are only available for 22 days each year! For more information please email phelanlucky@pmsf.org.uk
Christmas lights in London raise money for three charities!
Date: Thursday 25th November 2021 - Saturday 1st January 2022
The family at 12 Hillway, N6, London have been lighting up the Holly Lodge Estate at Christmas time for over a decade. They put their christmas lights up every year for local children to enjoy. They are on display between the 25th November 2021 through to the 1st January 2022. If you would like to make a donation and support three worthy charities, please donate via this link https://tinyurl.com/4adrxpn6
All donations received to the Just Giving page will be split between Phelan-McDermid Syndrome Foundation UK, Reverse Rett and Wood That Works.
#GivingTuesday - turned into #Giving22uesday!
Date: Tuesday 30th November 2021
Tuesday the 30th November is Giving Tuesday around the world. If you would like to, you can donate to PMSF and/or PMSF UK. We are all working to support our families. Help us turn GivingTuesday into Giving22uesday (the T has been replaced by 22 because PMS occurs on chromosome 22 in the 13.3 region and is sometimes referred to as 22q13 syndrome). By joining us on Giving22uesday, you are supporting critical research and advocacy work for our families. Please consider a gift of $22 or £22 to help PMSF and PMSF UK continue it's life-changing mission to support families with Phelan-McDermid Syndrome.
To donate to PMSF UK please visit https://www.justgiving.com/pmsfuk and/or to donate to PMSF please visit https://www.pmsf.org.
Annual General Meeting (AGM) 2021
Date: Saturday 13th November 2021
Our Annual General Meeting (AGM) took place on Saturday 13th November.
Trustees and Regional Reps were able to reflect on another year of amazing fund and awareness raising from our community in continued challenging circumstances, as well as looking ahead to the future.
Seasonal Cards
Date: Sunday 7th November 2021
Our Seasonal Cards are selling fast and we have already sold more than half of this year’s stock.
Don’t miss out. Place your order via our online shop http://www.pmsf.org.uk/shop.
Liverpool Marathon Runner
Date: Sunday 24th October 2021
Meet Dale who completed the Liverpool Marathon, running 26.22 miles in 4 hours 34 minutes and 17 seconds. Dalee was raising funds and awareness for PMSF UK as his 8 year old niece Brooke has Phelan-McDermid Syndrome (PMS).
Through everyone’s generosity, Dale managed to raise an impressive £1468 for PMSF UK.
A special thanks goes to Lauren & Jordan, Connor & Abby, Beth & Kieran, Ellis (Dale's Girlfriend), Sarah and Paul and Tim & Al for supporting Dale during the event and cheering him on when things got tough! We love the special t-shirts you wore on the day featuring a special little girl, Brooke.
London Half Marathon Runners
Date: Sunday 10th October 2021
Meet Claire, Lisa, Natalie and Rachel, who completed the Royal Parks Half Marathon, raising money and awareness for PMSF UK.
Between them they managed to raise a massive £6,430. Congratulations and Thank You!