Grateful Jordan shares her story as inspirational charity sets a £15,000 target for their Big Give Christmas Challenge

By Jill Dando News

Grateful big sister Jordan has shared her story of an inspirational charity as it sets a £16,000 target for their Big Give Christmas Challenge.

The MPS Society, which provides brilliant support to families affected by rare genetic conditions, wants to further boost mental health and wellbeing services for their community.

The charity, backed by The Priory Learning Trust (TPLT), would like to raise £15,000 to launch a series of mental health support services in 2022. 

To help, all people need to do is make a donation between 12 midday on Tuesday 30th November and 12 midday on Tuesday 7th December.

During this time, donations will be matched pound for pound at no extra cost to you and it means your donation will be worth twice as much to the MPS Society. 

Inspirational charity helping hundreds of families

The charity has also just published a letter from a very grateful recipient of the work that they do.

Jorden, age 26, is a proud big sister to her only sibling Maddi who is 14 and has MPS III Sanfilippo. 

She said: “I recently signed up for an online workshop organised by the MPS Society for adults who have a sibling with a rare disease. 

“I’m sharing my story in the hope that you can support their Big Give Christmas Challenge this year so they can arrange more great workshops next year.

“My mum Shelly always says that it was such a shock when Maddi was diagnosed as it was a disease we’d never heard of before and there is no cure. 

“My sister had to have three different blood tests to confirm what it was and because it’s so rare it was hard to understand.”

Every year The MPS Society reach 1,500 families and recently experienced a 12.6% increase in demand for their services. 

This small charity has been our anchor

The charity raises money and awareness of these conditions through fundraising, information, research and support.

Jordan added: “Over the years, our family has relied heavily on the MPS Society. This small charity has been our anchor. We have been able to make the most of amazing opportunities to meet other families and not feel so alone, as well as knowing that the MPS Society Support and Advocacy team are always here for us.

“I joined the workshop because it seemed like a good way to meet other adult siblings and share similar experiences. 

“In the workshop, we shared our feelings and it was reassuring to hear that others understood the challenges as well as the positives of being a sibling.”

For more on the charity see