Hi everyone!
If you've made it this far, thank you for taking the time to check out this organization that means so much to me. As most of you know, I live with and sometimes suffer from two chronic illnesses. Sickness is devastating. A large reason why I pursued graduate school education is so that I could be on the side of science that is actively seeking how we can better our health. Whether that is through uncovering new foundational science, developing novel therapeutics, or optimizing treatments that are already available. However, science must move beyond the lab in order to help everyday people like you and me. Chelsea's Hope is helping to make sure that happens for Lafora disease research.
Chelsea's Hope took a chance on me last year and invited me to join their executive board. They saw a motivated, high-achieving student with no non-profit experience but a huge heart for service and disease advocacy. This organization is run primarily by family members of someone with Lafora's disease, a rare childhood epilepsy and dementia that is fatal. From diagnosis, children and families are told that they have a few years to live during which the child will only continue to regress and become sicker. I have witnessed nothing as awful as Lafora's disease.
But then there is Chelsea's Hope. A coalition of parents and experts from around the world striving to cure these children. For 15 years as a 501c nonprofit, Chelsea's Hope has fought tirelessly for the Lafora children. This year we have hit an amazing milestone- the FDA approved a safety study for a potential Lafora disease therapeutic. We could not be more excited and are eager but cautious to see how this treatment will affect our Lafora children.
Please consider how you can join us in the fight against Lafora disease. Your donation today will ensure both the ongoing efforts of Chelsea's Hope and the completion of our new safety study. Our community would not be where we are today without the generosity of those around us and we thank you!
