MPS Society UK, here for those with rare diseases

It was an absolute pleasure for Bob Stevens, Group CEO of MPS Society and Rare Disease Research Partners, and Bennie Marshall-Andrew, Head of the Clinical Trial Support Team, to catch up with some of the Sangamo Therapeutics, Inc. UK team last week.

Following from last month’s #Spotlightonrare we are now drawing our attention to Mucolipidosis type III (ML III) which is one of the lysosomal storage diseases and is sometimes referred to as Pseudo-Hurler polydystrophy. ML III resembles a less severe form of MPS I Hurler and was first described by Dr Maroteaux and Dr Lamy in 1966. Babies may show little sign of the condition, but symptoms start to appear as more and more cells become damaged by the accumulation of unwanted molecules. You can find more information about the condition on our website https://buff.ly/4eFvaWI #Spotlightonrare

We are delighted to share Gracie's powerful documentary "Strategically Undervalued" which centres all around disability empowerment and offers perceptions of the people closest to Gracie on her condition. It's an absolute must-see! https://buff.ly/4fY0cKt

Sally from our Support & Advocacy Team reflects on the significance of our community events for families living a rare life as we aim to offer a variety of accessible activities to create many precious memories and to build a supportive community. >>https://buff.ly/40SEZxe For one week from 12 midday 3 December until 12 midday on Tuesday 10 December you can help us continue organising events for our members throughout 2025 by donating via the Big Give website and see your donation and your difference DOUBLE. Magic! >> https://buff.ly/4hMG6ov

Today marks World Sanfilippo Awareness Day and to spark the conversation we are sharing Kayden’s story, who loves sunshine, swimming and Peppa Pig. Kayden was diagnosed with the condition aged two after becoming very unwell. His mum Rachel gives an insight into life with MPS III Sanfilippo and explains how the family are adapting to Kayden’s changing needs. “Every year brings new symptoms and challenges but I do have support from family, Kayden's school and the MPS Society, which makes these challenges more manageable.“ Read the story >> https://buff.ly/40Lh4zG Our Support & Advocacy Team are here to support you. Call 0345 389 9901 or reach out via email advocacy@mpssociety.org.uk. You can also find a host of useful resources about MPS III on our website, including an in-depth booklet with information for individuals, parents and families >> https://buff.ly/3AGhPQ2 #WorldSanfilippoDay #Wearehere

For Ria, the annual Weekend of Hope and Remembrance in September has been a great source of comfort and support. This vital community event provides a safe space for families to remember loved ones among others who truly understand. Read Ria's story which highlights the importance of being able to step out of everyday life to reflect and share memories with people who can relate and offer solace https://buff.ly/3YFqiLr Thanks to the Big Give Christmas Challenge, we have the chance to raise an incredible £25,000 so we can continue organising events like these. Mark midday 3 December in your diaries when donations open for one week only and see them doubled for FREE, so your efforts will have twice the impact! #ChristmasChallenge

Our online resources are there for you to find helpful information and further insight into the conditions we can support you with https://buff.ly/3YTqOqy Today we are revisiting a research project published by MPS Society and Rare Disease Research Partners authors on the educational journey of individuals with MPS IVA Morquio.

We are thrilled to be taking part in The Big Give Christmas Challenge once again this year with the potential to raise a whopping £25,000! These funds will go towards funding our amazing family events over 2025. Nadine and her family joined us for a fun day at Legoland this summer and here she explains the importance of getting together and creating memories as a whole family: https://buff.ly/4eeormj If you make a donation between 12 midday on Tuesday 3 December and 12 midday on Tuesday 10 December via the Big Give website, you’ll not only see your donation double but you’ll also make twice the difference by enabling us to continue organising events for people and families living with MPS, Fabry or a related condition ❄️ https://buff.ly/4hMG6ov #ChristmasChallenge

Last week, during their tour of the US, Bob Stevens, Group CEO of MPS Society and Rare Disease Research Partners, and Bennie Marshall-Andrew, Head of the Clinical Trial Support team had a great meeting with Denali Therapeutics to discuss a current project and develop new ideas about keeping patients at the heart of everything we do #partnershipforpatients

Have you visited our Christmas shop yet? There are five brand new seasonal card designs and many other festive options to choose from 🌟 🌲 By purchasing our Christmas cards, you are helping to support children and families affected by MPS, Fabry and related lysosomal conditions. Take a merry peek now and let us know which one is your favourite https://buff.ly/48ytRr9