On April 27, 2009 Partnership for Cures created the Jasper Against Batten Fund at Partnership for Cures to fight Batten disease. This fund is set up in honor of Jasper Duinstra, a 4 year old boy recently stricken with Batten Disease, and in support of the many other children afflicted with this catastrophic disease. Jasper was recently diagnosed with the Late Infantile Neuronal Ceroid Lipofuscinosis (LINCL) form of Batten Disease. LINCL patients and other Batten patients suffer from this cruel and rare childhood disorder for which there is currently no known cure. Over time, children affected by Batten disease suffer from epilepsy, mental impairment and progressive loss of sight and motor skills.

Under the direction of Partnership for Cures, a small group of dedicated volunteers raised over $1M in 18 months, and Partnership for Cures sources several Rediscovery Research projects, including a gene transplant project at Weill Cornell Medical College that has already treated over a dozen children, two high throughput drug screening project that have uncovered some drug repurposing candidates, production of two different animal models of the diseases, and several alternative gene therapy projects.  Due to the success of this work, two other Batten Disease groups, Hope 4 Bridget and Noah’s Hope, joined the Partnership for Cures VHO Incubator in 2011.  These groups have raised significant additional funds for Rediscovery Research, including funding a biomarker project that will allow for better drug screening.

Click here to visit the Jasper Against Batten website

Click here to donate to the Jasper Against Batten fund