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Best friends, Tamsyn Tait and Manli Siu, both 32, are planning an event to raise funds for rare disease charity, CURE DM

The event will begin from 12-4pm at Stretford Public Hall on 18 September and all are welcome.

Tamsyn explains that they are hosting the event to raise funds for Myotonic Dystrophy as her 23-month-old daughter, Daisy, was diagnosed shortly with the congenital form of the rare disease.

“Getting Daisy’s diagnosis was a very traumatic time, but CURE DM has been a great source of support to us as a family” explains Tamsyn.

CURE DM advocates for those affected by the genetic neuromuscular disease, Myotonic Dystrophy, as well as driving research in the hope of eventually finding a cure.

Daisy was tested for the condition after doctors noticed she appeared ‘floppy’. The condition results in muscle-weakness that can affect everything from mobility, vision, the heart, brain, and digestion.

Tamsyn describes Daisy as a “bundle of energy”. Speaking on her and her partner, Jonathan Lawson’s, behalf she says “because of the progressive nature of the disease, we are cautious in our optimism for the future but right now, she is hitting almost all her milestones, and we are in awe of her determination. There is hope on the horizon with promising, ongoing, clinical trials so raising money at this time is crucial.”

Manli Siu, Programme Producer at Manchester’s Regional Theatre Young Director’s Scheme (RTYDS), lives in Chorlton, and has been friends with Tamsyn since their school days.

Manli suggested Stretford Public Hall as the perfect venue for its ethos on community and accessibility. The venue boasts full wheelchair access and has excellent transport links.