Posted - June 2017 in HSPRF News
Supporting HSPers in different ways
‘Raspberry Ripple’ – new performing arts company
By people with disability, for people with disability (and everyone!)
Accomplished professional Australian actor Kate Hood recently formed the disability-led theatre company Raspberry Ripple in Melbourne to address a hole in the mainstream performing arts.
She works with disabled and able-bodied performers to make theatre, which talks of living in the world together – articulating compelling stories that have not been heard before. Raspberry Ripple’s first production, ‘Enunciations’, was supported as an in-house production by Footscray Arts Centre in 2016.
She believes passionately that the best way to advocate for performers with disability is to make work that depends on them for its impact. She is excited by her new direction as Artistic Director of Raspberry Ripple.
Kate has graced Australian stage and screen since the hit 1980s TV series ‘Prisoner’, but her life, and career, took an unexpected turn when she was diagnosed with HSP, leading to the need for a wheelchair since 2006.
Kate says “The industry needs to view disability as something which can bring a wonderful dimension to performance work. It has always bemused me that the performing arts, which relies on stories for its very existence, has until very recently, not told stories of difference.”
Central to this, is the industry’s ability to see disability as nothing more than human variation, as opposed to stereotyping disabled people automatically as a ‘less than’ minority. The great news for budding disabled actors is that thanks to the work of passionate advocates such as Kate Hood and those supporting Raspberry Ripple, the state of play is slowly changing. Read more…
Raspberry Ripple Launch
Saturday 17th June, 12.30pm – 3pm
Performance Space, Footscray Community Arts Centre, 45 Moreland St, Footscray VIC 3011
We will celebrate with a couple of short performances, speeches, a showing of the website, drinks and nibbles – and a chance to just relax and mingle.
All are invited, however numbers are strictly limited on a ‘first come, first served’ basis. RSVP essential to this email address.
Recognition of a Carer
CHRONICLE Mum of the Year for 2017, Emma Jones from Valley, was unfortunately too ill to attend her special day out, which would have included a tour of Anglesey and Gwynedd.
Emma, 41, was nominated by her husband, Jonathan who called her a dedicated and selfless wife and mother.
The couple have four boys between them and Emma has put her career as a hairdresser on hold to care for her two youngest children, Ryan, 10 and Kieran, 15. They have both inherited their fathers condition, hereditary spastic paraplegia, which partially paralyses the lower limbs and means that they all have to use a wheelchair on a daily basis.
Through the years Emma has attended countless hospital appointments for both children. The appointments vary from dealing with physio, medication issues and with their youngest son, Ryan, his epilepsy. She helps with issues and needs on a daily basis in particular for Ryan, which consist of physiotherapy and stretches every morning to loosen his limbs, washing him, brushing his teeth and getting him dressed.
She was unable to attend on the day due to illness, however, the Chronicle’s Mari Geraint, Kerry Roberts and Lisa Sheperd collected Emma’s gifts and vouchers from the paper’s generous advertisers and passed them on to her.
SOURCE: North Wales Chronicle 30 March 2017 http://www.northwaleschronicle.co.uk/news/174399/chronicle-s-mum-of-the-year-2017-receives-her-gifts.aspx
Chronicle’s Mum of the Year 2017 receives her gifts
Published by: Arron Evans
10yr old Darcy raising funds for HSP
Darcy is 10 years old and his ideal occupation is to play basketball in the NBA when he’s grown up. His love of basketball is obvious by the framed posters in his bedroom, various basketball memorabilia and the many trophies he has collected in 5 years of playing the game himself. He currently represents his school in the after-school competition once a week and also plays for a domestic club called the Fosters Phantoms.
His favourite NBA team is the Golden State Warriors and his idol is Stephen Curry, who is famous for his 3-point baskets from long range. When he is not practising or playing basketball, he can be found playing his X-box or reading books. Darce also loves to learn about animals and care for the environment, having been a member of the ‘Green team’ at school a few times.
Darcy is also very passionate about helping to find a cure for HSP after the family’s lives were all impacted by the progression of the condition in his mum and he was asking about what he could do to increase awareness.
One of his mum’s suggestions was to get sponsors for shaving off his hair. He was keen to do this and asked her to contact the school and the basketball club on his behalf. Both were more than happy to help support this – the school put an article (and the Foundation website link to donate) in their online newsletter and the basketball Club put the same on their Facebook page, again with the link.
The tally continued to increase, with online donations to the Research Foundation reaching over $1,200, plus he had more than $300 in cash donations, so all in all, he raised over $1,500 towards HSP research!! He was thrilled with this outcome and amazed that an idea could become a reality and potentially change so many lives! Well done Darcy!
Darcy is keen to do some fundraising again, and may do another campaign in a year or two. Darcy’s efforts highlight that anyone can do this – so the message to everyone in the HSP community is “do something… anything… to raise awareness and money for HSP”. So get those creative ideas happening!!
Thanks to everyone who helped support Darcy in this initiative and who donated to such a worthy cause!”