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News release: PEOPLE WITH ALBINISM RECEIVE A GRANT FROM JEANS FOR GENES DAY 2019

July 24, 2019: The Albinism Fellowshipis celebrating after receiving the news they will receive a grant from Genetic Disorders UK, the national charity that organises the annual fundraising day, Jeans for Genes Day. This grant, from funds raised on the day, will be used to fund regional meetings for people with albinism.

Roselle Potts, Chair of the Albinism Fellowship, said: “This grant is wonderful news. It means we can fund meetings around the country for our members and their children, who have or are affected by albinism.

“This is such a rare genetic condition – only around 3,000 people in the UK and Republic of Ireland are living with albinism – that the chance to interact socially with other people with albinism and exchange experiences is extremely valuable.”

Genetic Disorders UK’s Jeans for Genes Day is an annual fundraising event when school children and office workers wear their jeans in exchange for a donation to the charity. Although individually genetic disorders are rare, together they affect one in 25 children. This means that more than 30,000 babies each year are born in the UK with a genetic condition.

Sadly, genetic disorders and their associated health problems mean that they are the biggest cause of death of children aged 14 years and under. Funds from Jeans for Genes Day are granted to specialised charities to provide care and support for children affected by genetic disorders. This year, the charity is encouraging supporters to pick a day that is best for them to hold their Jeans for Genes Day between Monday 16 and Friday 20 September.

Laura Pattison, Campaign Director at Jeans for Genes Day said: “We are delighted to be helping the Albinism Fellowship support children – and families – with albinism.  Our grant programme is open to all UK support groups and registered charities who work to improve the lives of children and families affected by genetic disorders. In 2019, 22 charities will benefit from the funds raised by the public on Jeans for Genes Day.”

Notes to Editors:

  • Jeans for Genes Day raises money for Genetic Disorders UK, a charity that provides much needed advice and support for individuals and families affected by genetic disorders. www.jeansforgenes.org
  • Jeans for Genes Day is an annual fundraising event, held from Monday 16 – Friday 20 September 2019. School children and office workers are encouraged to wear their jeans for the day in exchange for a donation. www.jeansforgenesday.org 

  • Genetic disorders are caused by an alteration in DNA. This may mean that either a gene or several genes are missing, repeated or in the wrong order. Altered genes can affect a child’s senses, movement, ability to learn or appearance. 

  • The Albinism Fellowship is a Jeans for Genes Day 2019 grant charity. They will receive a grant towards funding regional meetings for children and adults with albinism.
  • About albinism:  Albinism is a rare condition caused by a recessive gene. As well as having severe short-sightedness, and often the visual conditions of nystagmus (involuntary movement of the eyes) and photophobia (extreme sensitivity to bright light), people with albinism have distinctive white hair and pale skin. More information about albinism is available at:https://www.albinism.org.uk/about-albinism/

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