Heather Hodson

We are undertaking a 50km walk to raise funds for PMSF UK

Fundraising for PMSF UK
£4,315
raised of £1,000 target
Donations cannot currently be made to this page
Event: Peak District Ultra Challenge 2022, from 9 July 2022 to 10 July 2022
Participants: Heather Hodson, Dawn Lamin and Steve Lamin
PMSF UK

Verified by JustGiving

RCN 1157423
We provide support in the UK to people with Phelan-McDermid Syndrome

Story

My daughter Mollie was diagnosed with Phelan-McDermid Syndrome (PMS) in April 2021.  It was a scary time for our family and we had so many questions about the condition.  Thankfully there is a great charity called PMSF UK which offer support and guidance to families that are going through this and we want to try and raise some funds to continue the good work that they do.  


PMS is a rare genetic condition caused by a chromosome deletion.  When Mollie was diagnosed there was only around 300 cases in the UK at that point and around 3000 globally.  

The symptoms of PMS vary between each individual and every person is unique in their journey.  The most common characteristics found in those with PMS are intellectual disability of varying degrees, delayed or absent speech, symptoms of autism spectrum disorder, low muscle tone, motor delays and seizures.  

There is currently no cure or treatment specifically for PMS and sufferers will need some form of care for their entire life. 

The PMSF UK charity is extremely small, however, does such important work for families that are going through this journey.  Most medical professionals have not come across the condition, therefore, to speak to other parents and individuals connected with the condition is extremely important.  It is likely that the condition is extremely undiagnosed as you can only pick it up through genetic testing, which is not always carried out on the NHS.  

Mollie is currently 2 years old and is amazing! Even though her day to day life and everyday activities can sometimes be a struggle, she has pushed her boundaries and kept surprising us all.  

We thought we would do something to push our boundaries by completing a 50km walk in the Peak District.  We have not done anything like this before and it will be a challenge for one busy mum and two grandparents!! 

The small amount of pain to do this challenge is nothing in comparison to the parents and children that have to go through life with this condition, so we would be extremely grateful if you could support us and if possible make a donation to help support the PMS community.   


Heather, Dawn and Steve 


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About the charity

PMSF UK

Verified by JustGiving

RCN 1157423
We provide support to people and their families in the UK who have Phelan-McDermid Syndrome (chromosome 22q13.3 deletion). This support is provided through information, therapies and financial grants, and by organising family days and get-togethers. Thank you for supporting PMSF UK.

Donation summary

Total raised
£4,315.00
+ £381.25 Gift Aid
Online donations
£2,915.00
Offline donations
£1,400.00

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