Kcnq2 Cure Alliance Inc.

“Name: boston children's hospital address: 300 longwood avenue boston, ma 02115 cash contribution: 150,255”

“Expenses bank fees 11,330 office supplies 17 business insurance/regis. 1,419 it & web development 3,457 audio/visual 240 travel and meetings 5,851 total 22,314”

“Prior period adjustment 0”

“Kcnq2 cure alliance is a non-profit organization dedicated to raising research funds for kcnq2 epileptic encephalopathy, a rare and catastrophic form of epilepsy. By offering research grants for kcnq2 research with a novel approach, we can move researchers and the medical community forward to find better treatments and a cure while assisting afflicted individuals and their families.”

“In collaboration with boston children's hospital the grant funded the acquisition and characterisation to an updated kcnq2 registry and draft natural history study of 74 international patients. Countries thus involved and expanded in the study include bulgaria, china, australia, canada, norway, spain, croatia, united kingdom and the united states. In total 42 questionnaires were returned and analyzed for relevant clinical and overall significance relevant to future trial study. Additionally, the grant research leads at bch are preparing a report on the overall statistical impact of building out a registry backed with published articles detailing the impact the data has provided to assist with the creation of human cell lines, crispr work and additional input to translational therapies such as rna and other gene therapy approaches.”