Previous Events
CureSHANK Drug Development Symposium & Spanish PMS Scientific Conference - Barcelona, June 2025
In June 2025, five families and four professionals from the UK travelled to Barcelona for the CureSHANK Drug Development Symposium and Spanish PMS Scientific Conference. These four days were dedicated to gene therapy, repurposed medicines, and clinical trials aimed at delivering meaningful change for the PMS community. Many presentations will soon be uploaded to the CureSHANK YouTube channel, so please subscribe for the latest updates.
PMSF UK Family Day – Saturday 10th May 2025
Nearly 60 families joined us in North London for our latest Family Day, with over 300 guests representing the PMSF UK & Ireland community. Attendees aged 2 to 35 enjoyed a blend of research updates and classic fun, from sports and Lego to a fabulous shared lunch. It was a vital opportunity to trade stories and build lasting connections. Our next full UK Day returns in 2027.
10th Anniversary for PMSF UK
We marked our 10th birthday as a registered charity with 28 “Tea for Ten” events across the UK and Ireland. Over the last decade, our incredible community has raised nearly £500,000. This has allowed us to channel over £400,000 into vital research, family support, and national awareness days. This milestone belongs to every friend and supporter who helped us get here.
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.
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
Sean successfully completes tandem skydive for Willow and PMSF UK!
Date: Saturday 24th September 2022
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.
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.