Setting The Record Straight
Running a National Campaign day to day is not an easy task particularly when we both have children diagnosed with FACS and other symptoms that have derived from this too. We also like lots of our parents are still having seizures each day and as you know that takes it out on your body both mentally and physically.
Since our last update about the 3 meetings we held in 1 day with Department of Health, MHRA, and Sanofi we have had many queries about the work we are doing, progress we have made etc and have had numerous parents telling us people are mimicking and claiming to be doing the work we are.
So with progress at an immense level we have decided to set everyone straight
Lets start from the beginning…………
Epilim National Campaign – INFACT/FACSA was set up November 2012 after events being stabbed in the back from a selected few who thought they could cope without the Original Founder Janet Williams. For Janet in particular this led to many sleepless nights, seizures which then brought stress to family and children. It was then decided to get rid of the hangers on (2 board members) and solely concentrate on Government and Sanofi. In November 2012 we had nothing, as we had to establish ourselves and as Janet was Founder of OACS everything was returned back (we have proof and an inventory). We had no stationary, no money, and as we were new no backing.
When you look at how far we have come and achieved it was the best decision ever made.
Our aim is not to claim glory, to look good or to be seen to be having a marvellous time, because with the amount of work we do, at times it’s not. Our aim is :
For every child in Great Britain with a diagnosis of FACS to gain compensation that they morally deserve
I don’t know if it’s a jealousy thing, but why would people intentionally set out to try and ruin things when it is adamentally clear we are achieving each and every goal set out that we listed??? It is that ……Jealousy
As we reiterated to Sanofi, our campaign will not stop till every child and adult with FACS is adequately compensated. Janet has being fighting this for 24 years as her oldest child is 24 and for myself 10.
We have been told that many parents are being lied too from other parties. With our campaign we report on appointments etc after the event as we don’t want to get hopes up. We provide pictures so that people can see the progress and now I am glad we have done that.
Now working with MHRA / Department of Health we have been advised to have everything copyrighted in which has been done.
With regards to this weeks PRAC meeting, we are the only organisation involved with this who deal with Fetal Anti Convulsant Syndrome.
Note to Parents : We fully understand what you and your family are going through with this diagnosis. IT is tough mentally and physically. There are good days but mostly bad days and does have an impact on your whole family. You have seen our campaign go from strength to strength and no matter what that will continue. Do not listen to any false lies, false promises trust your instincts. If you have any queries you want to address….. do ring us, that’s what we are here for
I just hope that parents are advising other parents about our National database as we have been told by LSC basically any case being put forward for any matter concerning Anti Convulsants in Pregnancy (ie child with a diagnosis of FACS) will never receive any funding and that goes for families going through solicitors who claiming to do it “No Win No Fee” (as this has to have funding also). A solicitor will have money to investigate claims but when it comes to the next step and court action LSC refuse to fund due to so much being spent on this matter already. That is why it is so important any child with FACS, is on our National Database as we know now through INFACT it is the only way forward for our children.