Current Events/News: as of 08/14
 

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08/21/14 - NBF 14th Annual Golf Outing at Dye's Walk

10/10 - Stem Cells Inc. to begin 2nd human clinical trial

08/10 -Second Gene Therapy Human Clinical Trial Begins!!! 

05/08 - Clinical Trial Results Published in Medical Journals- Gene Therapy trial a Success

06/06 - New Gene Therapy Drug Moving to Clinic

05/06 - Stem Cells Inc. to begin human clinical trials

03/06 - P.J. COMPLETES clinical trial

12/05 - Nathan COMPLETES clinical trial

10/05 - Stem Cells Inc. receives FDA approval to begin human clinical trials

06/04 - Gene transfer clinical trial begins!!- Winning Battles to win the war!

05/04 - Genzyme submits abstract demonstrating our drug "works" on CLN2 KO mice.

04/04 - Gene transfer IND received FDA and all regulatory approvals

03/04 - Clinical Trial Screening Protocol Begins

12/03 - KO animal studies performed by major biotech prove successful

12/03 - Pledge agreement signed to start clinical trial-funding needed

04/03 - World Conference features NBF Projects

04/03 - STI press release about possible treatment for battens

6/01 - CBS 48 Hours, More Details

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Nathan & PJ's Story

Nathan is a sweet innocent little boy. He is our son and we love him dearly. When he was 4 years old, he was diagnosed with a fatal degenerative neurological disease called Late Infantile Batten disease. This disease takes no mercy on its young victims. Nathan is currently completely blind and has regressed in skills that he had once mastered. Every day he struggles. The child who once ran and played like other children now requires constant care. Nathan's future will consist of seizures, loss of motor control, as well as loss of the ability to think and reason coherently. Nathan will end up bedridden and will require a feeding tube for nourishment. The average life expectancy for a child with Late Infantile Batten's Disease is twelve years of age. It breaks our hearts to see this wonderful boy struggle so much. In appearance he looks very normal and others cannot understand why he struggles. At this point we are desperately searching for a treatment for his conditions. We are willing to do anything or go anywhere to help our son.

We founded the Nathan's Battle Foundation to aid in the development of therapies for this deadly disease.  Through the foundations efforts we found a potential cure.  In late 2000, we initiated a formal project with Cornell University's Weill Medical College to develop this life saving treatment and initiate a clinical trial. 

On March 12, 2001, complete devastation overcomes the Milto family when test results from their youngest son, P.J., comeback positive for Late Infantile Batten disease. The Milto family is attempting to deal with the unbearable diagnosis of their youngest son. Nathan's Battle now becomes a WAR!!! We MUST win both the battle and the war. Two of our three children have this dreadful fatal disease.

The initial human clinical trial has completed! Both Nathan and PJ participated in the inital clinical trial. Since the first trial, Cornell has continued its work and has made tremendous progress improving the gene therapy drug based on all the data learned from the first trial. A second generation gene therapy drug has been developed and is being tested in Phase Ia/II human clinical trail. More funding is still needed to treat additional children with this potentially life-saving therapy. Your support makes a difference in the lives of these children and in the lives of the future generations of children with this disease.

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