HemiHelp

HemiHelp is a UK based charity providing information and support to people with hemiplegia and their families.
Hemiplegia is a neurological condition which weakens one side of the body and affects approximately one child in every thousand births. It is often described as a form of cerebral palsy and its effects are similar to those of a stroke but in most cases parents only become aware that their child suffers from it during infancy when the primary symptom - the inability to use one arm - becomes apparent.
Mission
Central to HemiHelp’s work is improving the quality of life for children with hemiplegia and for their families. The charity gives hope to parents of children with the condition by providing much-needed help, advice, literature and one-to-one support.
The charity has a small team of staff in its London head office but remains a user-led organisation. The board of trustees is largely made up of parents of children with hemiplegia and people who have the condition themselves. It also relies on the support of a network of volunteers with personal experience of hemiplegia.
Support services
Helpline
HemiHelp’s helpline operates during school term time and offers advice and guidance.
Home Visits
The Home Visitors provide HemiHelp members with help claiming Disability Living Allowance or other benefits; information about behaviour or education and support with a range of other issues.
Local Groups
This scheme puts HemiHelp members in touch with other families in their area.
Pen Pals Scheme
Open to those aged five and above, this scheme offers children and young people with hemiplegia the chance to share experiences with their peers.
Events
HemiHelp runs regular events around the UK. The charity recognises that interaction with others who have had similar experiences of living with the condition is especially important as most children do not get the chance to do so at home or at school. The purpose of the events is to enable children to try out something new with activity specialists where they may not have the confidence or opportunity to do so in a school or after school club setting.
HemiHelp makes clear that a lot can be done to minimise the effects of the condition, through play-based activities. Children can be encouraged to develop better use of their weaker side through involvement in their chosen sports and hobbies.
History
HemiHelp started when a group of parents were brought together by a research project based at Great Ormond Street.
The London Hemiplegia Register (LHR), led by Carol Yude and Robert Goodman, recruited 463 families with children aged 0 to 16 to examine the causes and consequences of childhood hemiplegia.
The families who took part in the research were informed of the study’s progress through a quarterly newsletter written by Carol Yude which included updates on the research and information on how to support children with hemiplegia. Correspondence on topics such as education, therapy and specialised equipment grew with each issue of the newsletter. Carol Yude later invited parents on the LHR to take over the newsletter’s production and 12 volunteered their time. In addition to the newsletter, the group began to produce further information materials and run workshops and sports days.
HemiHelp was officially founded in 1990 and achieved charitable status the following year. Its objective was to increase general awareness of the condition and provide information and support to families and carers of children with hemiplegia. Since then its remit has widened to support professionals working with those affected by hemiplegia and young adults. It also offers an international membership scheme for those living outside the UK. HemiHelp is now a national organisation with a membership of more than 3,600 families and professionals.
Key People
Royal Patron

Her Royal Highness Princess Alexandra
Patrons
The Countess of Bessborough
Sir Dominic Cadbury
Mr and Mrs Paul De Chazal
Mr Richard Fitzalan Howard
Mr Roddie Fleming
Mrs Peter Haig
Mrs Edward Harley
Miss Elizabeth Johnson
Mr Sascha Kindred
Lord and Lady Leach
The Duchess of Norfolk
Mr John Reizenstein
Mr Paul Riseborough
The Dowager Viscountess Rothermere
Miss Jacquetta Wheeler
President
Professor Robert Goodman
Vice Presidents
John Adams
Josephine Fitzalan Howard
Hilary Latham
Dr Carole Yude
Fundraising
HemiHelp receives no government funding and therefore raises all of its money through fundraising, both from events and from the efforts of its community of members and supporters.
There are eight paid members of staff and a wide network of volunteers who work together to provide HemiHelp's essential services. It is the only charity of its kind in the UK.
HemiHelp has held an annual Children Helping Children concert since 2003, where talented young musicians and dancers perform to raise money and awareness for HemiHelp and hemiplegia. The 2011 concert, a special 20th anniversary edition, took place on Saturday 19 February at Cadogan Hall, Sloane Square. The evening raised £45,000.

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