Rare Disease Patient Group Streams Play To Fundraise

Patient groups worldwide continue to be badly hit financially as most of their usual fundraising methods stopped during the pandemic. One UK group organised the streaming of a recorded play about their condition to attract donations for views.

Getting Better Slowly

Guillain-Barre and Associated Inflammatory Neuropathies (GAIN) UK is a charity which helps people understand and manage acute and chronic variants of Guillain Barre Syndrome (GBS), raises awareness, and promotes clinical and non-clinical research into these conditions.

From a prominent tab on their home page, it’s easy to find a page for the one-hour play ‘Getting Better Slowly’. The streamed recording was taken from a 2017 touring production of the play which traces the onset of paralysis and slow recovery over two and a half years experienced by a young man with GBS.

Awareness and fund-raising

Streaming the play achieves the dual aims of raising funds and making clear what it is like to live with GBS. Adam Pownall plays himself in the play, sharing his experience of contracting the syndrome and quickly becoming paralysed when he was a fit 26-year old dancer and performer. The play captures Adam’s journey from diagnosis through to rehabilitation.

Commenting on GAIN’s streaming of the play during the pandemic Adam said:

“…Our goal has always been to help raise awareness of such a rare condition and make people aware of the GAIN charity and the important work they do. When we toured with the production, we found that this story, whilst being engaging theatre, is also an important learning tool for medical practitioners, and for anyone who has suffered or whose loved ones have suffered a debilitating illness.”

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