New Year, No Pressure

Its finally 2019 and certainly there is no pressure.......

Hope this year goes well for all.

Via

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‘One in a million’ Edinburgh toddler set for rare disease trial in US: Reports Edinburgh Evening News

We were interviewed by the Edinburgh Evening News where they highlighted Anya's rare medical condition. I have attached the report on this post. The Edinburgh Evening News report was written by Kevan Cristie ‘One in a million’ Edinburgh toddler set for rare disease trial in US KEVAN CHRISTIE Katherine Behl with her 18-month daughter, Anya, with dad Abhishek. Pic: Lisa Ferguson The family of an 18-month-old toddler who has a condition so rare it only affects one person in a million are raising funds for a groundbreaking gene therapy project in the US. Anya Behl, suffered her first episode of what would later be diagnosed as Alternating Hemiplegia of Childhood (AHC) at 10 weeks old in October 2017. Those with the lifelong condition are described as ‘human timebombs’ as the illness which is like having seven diseases at once - including stroke like paralysis and symptoms of Parkinson’s disease, can strike at anytime. Her parents Abhishek and Katherine told how everyth

Creative WWF Wildlife Adverts that make you Save Our Planet

We always know that good advertising plays a key role in ones responsible development. Wildlife charities have worked very hard to be creative, and to pass a good message to their viewers about saving our planet. How important it is for us humans to start thinking and start saving our wilderness as we live in and what is around us. ---- Some of the very powerful adverts are from WWF campaigns . For those who have not a clue to what what WWF is all about: Here we go - WWF (World Wide Fund for Nature) is an organization which mission is to stop the degradation of our planet’s natural environment, and build a future in which humans live in harmony with nature. WWF was founded in 1961. It was the product of a deep concern held by a few eminent gentlemen who were worried by what they saw happening in our world at that time. Since those early days WWF has grown up to be one of the largest environmental organizations in the world. (more on Wiki ) Below we list WWF ads. Hope you’

Signing up to Alternating Hemiplegia of Childhood (AHC) UK Newsletter.

Yes people, It is finally here and we are working on sending out updates to various people about Alternating Hemiplegia of Childhood UK via a newsletter and the chair's update. If you would like to be involved and to be kept informed about the various updates that are happening with AHC in the UK and all over the world - Please sign up to the new AHC UK Newsletter for updates ( Click on & add your name/email on this attached link : http://eepurl.com/gD2M3n ) We look forward in sharing our updates with you all.

Anya is 1 in a million: Funding for all AHC Kids & Gene Therapy Research

We are so grateful for all the amazing support, messages and generous donations to research from our wonderful family and friends in 2018.  A heartfelt thanks. We have been blown away by your kindness! In February 2018 at 6 months old, Anya was given the diagnosis of Alternating Hemiplegia of Childhood (AHC) after genetic testing for the ATP1A3 gene. This is an extremely rare condition, affecting one in a million; it arises from a chance, non-inherited error. It is something we had neither heard of nor something we could ever have envisaged our precious first-born having to struggle with. It’s been a very difficult year and we’ve seen symptoms (sometimes life-threatening) that we wouldn’t wish any parent to witness.  AHC has effects beyond the neurological ones and sadly Anya has had breathing and cardiac difficulties too. Almost all children with AHC have physical, cognitive and developmental disabilities across a spectrum. By the age of two 50% have epilepsy; and

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Video: "One in a Million" By Owen Cant