MPS Society to Use £195,000 Grant to Reduce UK Patient Isolation

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by Mary Chapman |

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The MPS Society will use a £195,000 (about $268,000) award from the National Lottery Community Fund to build connections and reduce feelings of isolation — largely caused by the COVID-19 pandemic — among members of the U.K.’s mucopolysaccharidosis (MPS) community.

The grant, awarded from monies raised by the U.K.’s lottery, will support the MPS Society’s three-year plan to provide opportunities to help build relationships and encourage peer support. The nonprofit is seeking to create a platform for MPS patients and their families to shape the services that matter to them.

“Our community’s needs have been exacerbated by the COVID-19 pandemic and lockdown,” the MPS Society states in its announcement. “From the threat to life, to the limits to independence and social interaction, our community has never been in more need of our support. To meet this need, we have adapted our plans for the next three years to support the MPS community to still build connections and receive the support they need through these times.”

The organization will build upon “The Vision Project” it established in 2018 that prioritized themes labeled “connection,” “transition,” and “adulthood.” Of those, the need to build connections across the MPS community — which includes Sanfilippo syndrome — was most commonly cited by stakeholders.

“Patients and families value connection with others who understand what they are going through,” the organization said. “Our beneficiaries reported a desire for more opportunities and varying ways to connect with peers including by age group, disease type, and location.”

MPS a group of inherited lysosomal storage disorders that eventually result in progressive damage to cells, tissues, and various organs. However, the severity of the different MPS disorders varies greatly among patients — even among those with the same disease type and between individuals of the same family.

Throughout the COVID-19 pandemic, the MPS Society has been “checking in” with its patient community with phone calls, surveys, and Zoom meetings.

“The resounding response is that these themes need to remain our primary focus, with the addition of immediate wellbeing support due to the crisis,” the organization said.

In response, the MPS Society is planning family events, virtual wellbeing support, and a young people’s advisory board.

Specifically, the organization aims to bring families affected by MPS and related disorders together and encourage them to stay connected and share experiences. It also seeks to build connections and reduce social isolation during pandemic-related lockdowns and beyond.

The new advisory board will be comprised of young patients who will have a say in how the organization serves their specific demographic. Finally, the nonprofit plans to help sustain community connections and provide families with expert information and support.

“Every member — the affected child, their parents, siblings, and wider family and friends network — will all benefit from access to our events and support services,” the organization states. “The impact will be a more connected MPS-affected community, reducing isolation and providing support to families who would otherwise be isolated by their disease.”

The MPS Society, which has communicated with community members largely through webinars and virtual events, hopes to return to full programming next year, with in-person services.

The National Lottery Community Fund gives grants to U.K. organizations to help improve their communities.