1st Year Anniversary

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FACSA Support Group

FACSA Support Group


Exactly 1 year ago today, after long discussions with our husbands, both Janet and I decided to concentrate more on tackling the Government surrounding the issues of Epilim during pregnancy. We knew it would involve going down to London a lot but like I said at the time, if it involves working hard for a while to achieve results it HAS to be done on behalf of the approx. 20,000 persons affected by Epilim. It has been hard keeping on task when jealous accusations, lies and other means to distract us having to deal with
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For me personally I find it a lot harder. The kids are still young so Joe is at home with them all. The kids find it hard me being away, and always results in tears days before I go, in which I normally end up crying too. Why do you have to do the Campaign?? Is a question they ask me……It has to be done though, the ages they are they are too young to understand. This past year has flown by. It has brought some fabulous results Campaign wise. We are finally getting answers from the people that matter or at least have an impact in Government. I cant tell you how weird it is actually going into Westminster and MPs letting onto you, the security people knowing who you are as we are there so often. Janet and I now have a team of around 15, and we have also met some fabulous people on the way. Never in my wildest dreams would I have imagined being at this point. As my husband Joe quoted yesterday :
Whatever you do, make sure you have a plan
If you fail to plan, your planning to fail

List of Achievements since November 20th 2013

• Reached Phase 10 on MP’s meetings with 50 MP’s supporting.
• Met with Diane Abbott MP Labours Health Team
• Support from the Thalidomide Campaigners
• Award winning Website – Mumpreneur Award
• Produced new leaflets and Parent Brochure
• Media Conference at Parliament in January 2013
• Inside Out Programme in February 2013 – http://www.bbc.co.uk/news/uk-england-london-21523434
• Westminster Hall Debate in March 2013 – http://www.theyworkforyou.com/whall/?id=2013-03-26a.438.0
• Meeting with Epilepsy Action agreeing on figures and offering support
• INFACTs campaign featured in the Epilepsy Action Magazine.
• Met with Epilepsy Society working towards information input.
• INFACT become International (New Zealand)
• Brought in 2 new members to Medical team Dr Rob Levy & Dr Jim Morrow
• 1st July Panorama programme – http://www.bbc.co.uk/programmes/b036fddg
• 16TH August met with MHRA
• 3 Early Day Motions EDM No 9 – 9th May 2013 http://www.parliament.uk/edm/2013-14/9
EDM No 1021 February 2013 http://www.parliament.uk/edm/2012-13/1021
EDM No 385 http://www.parliament.uk/edm/2013-14/385

• Became stakeholders in NICE
• Became Stakeholders in MHRA
• Joined Thalidomide APPG to become Harmful Drugs Prescribed in Pregnancy
• Meeting with Norman Lamb MP Minister for Care & Support asking for Public Inquiry

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To view Panorama/Inside Out please click on the link

So as of tomorrow we are going into our 2nd year. To all our parents and families affected by FACS, we will NEVER stop campaigning, with this issue until the things we have listed to accomplish have been reached…… not long to go.

We would like to thank in particular Nick Dobrik, Guy Tweedy and Mikey Argey, for all your help and dedication and for believing in us that WE WILL succeed, the way you did. Another huge thanks goes to 1stly Dr Peter Turnpenny, for meeting with us regularly and accompanying us in VIP meetings also to Dr Rebecca Bromley and Dr Gill Clayton Smith for meetings and support. Thanks also goes to David Body (leading solicitor for litigation that ended in 2010) for your insight and direction and for fully supporting and helping us. A big thankyou to our new financial team who are busily preparing for the future, its been great meeting with you finally. To all the journalists, documentry makers from Inside Out and Panorama it was a pleasure working with you all

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