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One woman’s fundraising mission out of love for her nephew

Words by Blyth Brentnall

Tamara Ward is on a continuous fundraising mission in aid of people living with Dravet Syndrome, a rare form of childhood epilepsy affecting one in every 15,000 people in the UK.

Fantastic! What's the challenge?

In 2021, Tamara started running five kilometres every day in May, after visiting her seven-year-old nephew, Dominic, during the Covid lockdowns.

She has run throughout May every year since - and hundreds of people have joined her!

So far the Run 5km Everyday In May For Dravet challenge has raised £240,000 for the charity, Dravet Syndrome UK.

Galia Wilson, the charity’s chair and trustee, has a son with the syndrome and has also joined the challenge. 

She explained that the funds would support vital awareness-raising and research to help those affected by the condition. "It's also important for us to find families that are living in isolation without the support that our charity could provide them," she added.

Charity check-in 

At Smiley Movement, we like to elevate the work of charities across the world. Here are three charities whose causes align with the themes in this article.

Dravet Syndrome UK. A charity established by parents of children living with Dravet Syndrome, to share resources and build awareness. Discover more here.

Rare Disease UK. This is the national campaign for people with rare diseases. Find out more here.

Beacon. Beacon (formerly known as Findacure) is a UK-based charity that is building a united rare disease community with patient groups at its heart. Support them here.

This article aligns with the UN SDG Good Health and Wellbeing.

This article aligns with the following UN SDGs