Rare Disease Report

Morphsuits, Ed Sheeran, Prince Harry, and Batten Disease

MAY 28, 2017
RDR Staff
It’s been a tragic week for the citizens of Manchester.

To help bring solace to the city while also raising awareness of rare diseases, Batten disease advocates, 'Ollie's Army’ will be running in the Great Manchester Run this Sunday. And the army will be running the race in morphsuits.
Hopefully, that will bring a smile to some of Manchester.

Ollie’s Army is a group helping  two children, Ollie and Amelia, who have Batten disease. Ollie and Amelia are brother and sister.
Ollie first caught the public’s eye last year when he gave Prince Harry a hug during a Well Child event. 
Since then, he has been serenaded by Ed Sheeran, undergone brain surgery, and introduced his sister, Amelia to Prince Harry.  Part of the army's mission is to help the 2 children with their 'wish list' while also raising awareness of this very rare disease. 

Ollie's Army began as a fundraising group to help the family manage Ollie's condition. However, following his diagnosis, the family had his 2 brothers and 1 sister genetically tested and Ollie's younger sister, Amelia, tested positive. Recently, she has begun to show some of the signs of Batten disease.

Batten diseases are a group of lysosomal diseases in which substances called lipofuscins abnormally build up in the body’s tissues. Lipofuscins are composed of proteins and fats, and they normally form in the body. In Batten disease, however, the body is unable to properly eliminate excess lipofuscins, leading to abnormal buildup. They accumulate in the brain, eye, muscle, and many other parts of the body.
The most common form of Batten disease is juvenile Batten disease, in which symptoms begin in early childhood. 
In April of this year, the FDA approved the first drug, Brineura (cerliponase alfa), for 1 form of Batten disease, late infantile neuronal ceroid lipofuscinosis type 2 (CLN2).

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