05 November // In a final attempt to persuade the Government to take action on the UK’s unacceptably high level of Neural Tube Defects (NTDs) in pregnancy, outgoing Food Standards Agency Chair, Lord Rooker, is to raise the issue of the fortification of flour with folic acid in the House of Lords this week.
Lord Rooker, who has served as Chair of the Food Standards Agency since July 2009 is concerned that despite a longstanding FSA recommendation that flour should be fortified with folic acid, the Government has taken no action to effect this, nor any other robust action to ensure that women of childbearing age take folic acid at the right time. Currently it is estimated that only 5.5% of women take folic acid correctly.
25 October // The launch day of the PUSH global community campaigning platform! Starting today everyone concerned about Spina Bifida and Hydrocephalus around the world can become a member of this global movement and PUSH! their messages further.
Give it a try now: become a member (it's free), create your campaign or see what's going on in the world of SB/H! We are People United for Spina bifida and Hydrocephalus!
Stay connected with the community:
Let's PUSH! together for change!
25 October // For the second time in history, all around the world many IF members, foundations and NGOs organise events to mark the World Spina Bifida Day.
Activities that we know of vary from conferences, workshops, marathons, awareness weeks to concerts and gatherings for the families. Have a look at the events happening in your country: www.worldspinabifidahydrocephalusday.com
In Bulgaria for example LUMOS and IF coorganise a workshop on the "Treatment and Experiences of Children with Hydrocephalus in Bulgaria and their Families". The second day will be fully focused on building the capacity of parents organisations to campaign and raise awareness of hydrocephalus treatment and related issues.
The World Spina Bifida day in Uganda will be celebrated at regional level by IFs partners in Kampala, Gulu, Mbarara, and Mbale. The parents support groups working together with the SHIP coordinators will organize activities in their sites. In Kampala in the central region, radio spots will be run on the local radio stations and a talk show will be held to sensitize the public on SBH and share experiences of parents and youth.
Raising public awareness and making issues faced by people with Spina Bifida and Hydrocephalus more visible are the aim behind this initiative created by IF's General Assembly in Guatemala 2011.
Good luck and have fun!