Juju and Friends CLN2 Warrior Foundation

CLN2 Battens Disease (Neuronal Ceroid Lipofuscinosis Type 2) is an ultra-rare, neurodegenerative lysosomal storage disease, caused by an enzyme deficiency of tripeptidyl peptidase 1 (TPP1). CLN2 disease affects motor skills, such as sitting and walking, and speech development. This condition also causes the loss of previously acquired skills (developmental regression), intellectual disability that gradually gets worse, and behavioral problems. Individuals with this condition often require the use of a wheelchair by late childhood and typically do not survive past their teens.

Juju was diagnosed with CNL2 on May 28, 2021. He has such a big personality, and a smile and laugh that can light up a whole stadium. Juju’s diagnosis took a toll on him, and he has lost his ability to walk without assistance, he’s slowly regressed and lost some basic skills. It is a daily struggle to watch my son battle with this horrible disease. He loves to dance still, loves playing with his toys, and is very playful. Juju is such a loving kid, and there’s hope for the future. Through all of the trials and tribulations we still feel internal joy, although externally it may be hard at times. Our family will never lose hope and will continue to strive for what is best.

This is a battle that all of these warrior children are all facing together. They all deserve a chance at a regular healthy life.

Juju and Friends CLN2 Warrior Foundation mission objective is to fund research for the development of gene therapies for CLN2. This will include the discovery of less toxic treatments. Every contribution matters. There’s several different ways you can support Juju and Friends CLN2 Warrior Foundation. For Rare Disease day I would like to advocate and participate in any way possible.