September
15

Campaign Launched to Help Parents of Children Born With Limb Difference

Posted on Monday 15th September, 2014

EN

EDRIC DysNet

What If?

PRESS RELEASE

A multi-national campaign to fund advice and support services for the parents of children born with limb disabilities is being launched today (Monday September 15). 

The fundraising drive is being run by an umbrella body of organisations of people affected by congenital limb difference called EDRIC (European Dysmelia Reference Information Centre). 

In partnership with crowdfunding platform, Indiegogo, EDRIC is raising funds to create online resources so that parents who have a child with a limb difference (whether they know before or after the birth) are able to access accurate and reliable information and no longer feel isolated. 

The campaign - "What If? - Your Baby Has a Limb Difference" - will run across five languages - English, French, Spanish, Italian and German - and will rely upon social media and specially produced video content in order to spread the word. 

Indiegogo

"Having a child with a limb difference often comes as a shock to parents, many of whom don't know who to turn to for help," said EDRIC Chairman Geoff Adams-Spink. 

"In partnership with many of our member organisations, we are going to set up online information sources."

In preparation for the campaign, EDRIC has undertaken research that shows that the majority of parents of children with congenital limb difference (known as dysmelia) don't know where to turn to for support.  A survey conducted by the organisation shows that - of those who have already responded - 80% were not aware of any sources of help or advice to support them during their child's early years. 

Four respondents reported that they were given less than an hour to decide whether or not to terminate pregnancy after a diagnosis of limb difference.  Another respondent says she was offered a termination five months into the pregnancy - her child had just one hand missing. 

"We need to turn this situation around," said Mr Adams-Spink. 

"People are either shocked when their child appears or they have an ultrasound scan and are unsure whether or not to proceed with the pregnancy.  It's important, at this time, that parents or parents to-be are aware that people live happy and fulfilled lives with a limb difference."

The campaign kicks off with a high-impact, 90-second video - "Ordinary People - Extraordinary Lives" - that shows a number of people with limb disabilities doing amazing things. 

The campaign has commissioned a number of short videos in which people living with limb difference are asked to answer the question, 'what difference have I made to the world?'.  EDRIC hopes that people will not only be inspired to share these videos with friends and family but will, when appropriate, record their own contributions for use in the campaign. 

EDRIC's 'What If?' campaign aims to raise 30,000 Euros to fund online resources. 

/ENDS

NOTES FOR EDITORS

  • For further information please contact EDRIC Chairman, Geoff Adams-Spink by email: geoff.adams-spink@edric.eu or call +44 7711 898787
  • The campaign is using the Indiegogo platform in order to raise funds - further information can be found on the Indiegogo website
  • The campaign's launch video can be seen here
  • The European Dysmelia Reference Information Centre is a non-profit NGO registered in Sweden (no.  802444-3015)
  • EDRIC has 27 member organisations in 19 countries - the majority of them EU member states - and represents 5,000 people living with limb difference
  • EDRIC runs an online Dysmelia Network (DysNet) supported by a frequently-updated, multi-lingual website, supported by social media activity on Facebook, Twitter and YouTube, and has an online multi-lingual forum, RareConnect, for information sharing and peer support
  • Dysmelia describes a number of extremely rare conditions - further details are available from DysNet

  • Tags: LimbDifference Campaign Indiegogo Crowdfunding Disability Dysmelia DysNet Press Release Press Release Press Release

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