For the past 13 years I have volunteered with a very important organization that is trying to save childrens' lives. Chelsea's Hope Lafora Children Research Fund was created to help fund research to develop a cure for Lafora Disease. Lafora Disease is an ultra-rare neurological condition that strikes children in the prime of their lives.

Children with Lafora begin their lives as perfectly happy, active and otherwise healthy kids. But in their early teens they begin to have seizures. These seizures then begin to increase in frequency. In spite of anti-epileptic drug therapy, these seizures become increasingly uncontrollable. The kids then begin to face difficulty walking, and talking, and eating. As the disease progresses, Lafora kids regress intellectually, suffering with childhood dimensia. As this continues they are unable to participate in the normal childhood activities. They progressively lose their ability to walk, becoming wheelchair bound. They must be fed through a G-tube. They have increasingly constant myoclonus (uncrollable shaking). They may experience intermittent blindness and hallucinations. Lafora kids progressively lose their ability to walk, talk, feed themselves, and they die in a vegetative state. Everything I have described happened to my daughter Kelsey, who died in April 2014.

But before my daughter Kelsey died, I promised her that I would not quit fighting for Lafora kids until we have a cure.

I need you to help me keep that promise.

And there is hope. For the last 15 years, Chelsea's Hope has been raising funds for many dedicated researchers who are working to find a cure. And now we have an opportunity to evaluate this drug with actual Lafora patients!

This is why we need to raise money... to help support this safety study. 

What Can You Do?

Please consider donating to this important cause. As an ultra-rare disease, we must rely on grass-roots and crowd funding, like this appeal. 

But I also ask that you forward this appeal to friends, family and colleagues in your network. Through this crowd-based approach, we hope to fully support this effort.

It is too late for my daughter. But it is not too late for the children who are currently suffering with Lafora.

Thank You

Frank Harris

President - Chelsea's Hope Lafora Children Research Fund