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Epilepsy Action Helping Hands Awards - IN-FACT

27 Aug 2020

Emma Murphy and Janet Williams are the founders of the Independent Fetal Anti Convulsant Trust (IN-FACT).

They were nominated for the award by 12 families who have children affected by sodium valproate that was taken during pregnancy.

Both Emma and Janet have children with fetal valproate syndrome. The women took the epilepsy medicine sodium valproate during pregnancy without being made aware of the risks. They established IN-FACT in 2012 to support other families in a similar situation to them and campaign on their behalf.

Over the past eight years, Emma and Janet have worked non-stop. They have met with MPs and worked to set up the All-Party Parliamentary Group (APPG) on sodium valproate. Their efforts were crucial in bringing about and supporting the Independent Medicines and Medical Devices Safety Review. The review, which investigated three medicines or medical devices including sodium valproate, published its report ‘First Do No Harm’ in July 2020.

The pair were nominated for the award by 12 other parents who have children affected by sodium valproate taken in pregnancy. One of these parents said: “Both Janet & Emma have continued to support us; a family with 2 children who have a number of diagnoses, difficulties and disabilities. These all fall under the umbrella of Fetal Valproate syndrome, a form of Fetal Anti-Convulsant syndrome, which they have both now been diagnosed with. Their hard work and campaigning has given us a voice. This has had a huge impact on my family; knowing that our voices have been heard and that the difficulties we encountered along the way have been acknowledged. It has exposed that sadly we were not alone in our suffering.

“I believe they are truly worthy of this award as true ‘epilepsy heroes’. Despite having epilepsy themselves, which they have to manage, as well as children who are also affected, they have provided ‘helping hands’ to my family and many women and families up and down the country.”

When asked what they would like to say to Emma and Janet, one parent responded: “‘Thank you’ simply doesn’t seem enough for the amount of help and support you have both given”.

On receiving the award, Janet Williams said: “Over the past years the recognition for Fetal Valproate and Fetal Anti-Convulsant Spectrum Disorders has been difficult to reach, ignored and withheld. We are extremely touched to be nominated for this award by our families, and it means a great deal to us both having supportive parents onboard with the campaign and personally. Our work in Parliament has been demanding, a great commitment but has been truly fulfilling, a huge journey and learning curve. We have every intention on continuing with the work we do to support every family affected by anti-convulsants in pregnancy.”

Emma Murphy added: “We are very grateful and proud to now be receiving this recognition from Epilepsy Action. It has been an arduous eight-year parliamentary campaign for IN-FACT alongside helping parents and families through our support group FACSA.

“Our campaign gathered momentum when we discovered and presented to ministers archive evidence that proved governing bodies were always aware of the risk of defect to the baby in utero from valproate. Yet they chose to actively withhold this information from the patient. We look forward to Epilepsy Action’s assistance in ensuring the implementation of the ‘First Do No Harm’ recommendations.”

Emma and Janet’s work shows truly remarkable tenacity on behalf of thousands of families in similar situations. Congratulations and thank you!

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