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and the support of The Saoirse Foundation, Taylor's Tale, Garrett the Grand Batten Fighter, Hayden's Batten Disease Foundation, and the Batten Disease Support and Research Association, is anticipated to enter clinical trials in 2018.
The charity Batten Disease Family Association has launched a petition to have the decision reversed.
Nicole and Jessica Rich, pictured with mum Gail, dad Matthew and brother Louis, have both been diagnosed with Batten disease but a government body has decided the NHS will not fund a potentially ground-breaking treatment
Batten disease is commonly used to make reference to all forms of  Neuronal Ceroid Lipofuscinoses (NCL).
It got worse and after 18 months the doctor came back to us saying she had Batten disease.
Carly, 34, and Paul, 38, were devastated when neurologists diagnosed the youngster with rare Batten disease, which experts say "breaks down the brain, cell by cell".
Two years later, he faced another challenge alone to run coast to coast for Batten Disease Awareness.
Batten Disease - Pipeline Review, Half Year is built using data and information sourced from Global Markets Direct's proprietary databases, Company/University websites, SEC filings, investor presentations and featured press releases from company/university sites and industry-specific third party sources, put together by Global Markets Direct's team.
Batten disease is named after the British paediatrician Frederick Batten, who first described it in 19 0 3 .