Melissa Froio Foundation

New Batten Disease News

Melissa Froio Foundation has joined with the Beyond Batten Disease Alliance.

The Melissa Froio Foundation along with BDSRA and other Batten Family charities have joined the Beyond Batten Disease Alliance.

The goal of this alliance is to accelerate the pace of progress towards developing treaments, and one day, a cure for Batten disease

Batten Disease Drug Trial Reduces Progression by 80% -
http://investors.bmrn.com/releasedetail.cfm?ReleaseID=958565

BioMarin Late Infantile Trial Summary - http://bdsra.org/biomarin-cln2-results/

FDA Accepts BioMarin Application for Late Infantile Drug Therapy -
http://investors.bmrn.com/releasedetail.cfm?releaseid=981569

BioMarin Announces Update to Drug Trial by FDA -
http://www.econotimes.com/BioMarin-Announces-Update-to-Brineura%E2%84%A2-Cerliponase-Alfa-Program-for-Treatment-of-CLN2-Disease-a-Form-of-Batten-Disease-274163

Spark Therapeutics in Philadelphia is developing a gene therapy model for a one-time dose to ‘correct' the defective gene for children with Late Infantile and is expected to begin a trial in 2018.

The University of Nebraska under the direction of Dr Tammy Kielian plans on starting a drug trial with 9 Juvenile form of Batten Disease