Please share our story, on your social media, through email or word of mouth. Raising awareness for rare diseases is so important, and you never know who it will reach. It was through social media that we were able to contact the right foundations to secure treatment and be in touch with the right organizations to keep up to date with the latest research.
Your generous donations help cover all the healthcare expenses not covered by insurance or government agencies, such as equipment and therapy, travel, adjustments at home, and respite care. We will donate the remaining amount to research focused on the diagnosis and treatment of Batten diseases like CLN2. Our goal is to start a foundation and be able to make a bigger impact in the rare disease world.