Louie's HUWE for Medical Research

Louie was diagnosed with a genetic mutation of HUWE1 in 2014 when less than a dozen people had his same diagnosis. Because of this mutation, Louie suffers from severe epilepsy, hypotonia, autism (level 3), severe intellectual disability, among other things. Over his 8 years of life, I have received multiple offers from family and friends to help financially. I always declined because I knew one day, there would be a time when I would need their help. I just didn't know when until I got a letter in the mail a few weeks ago. I was approved a nonprofit for Louie and other children like him to give them the medical research they need to find a cure. Many medical professionals will study a mutation or disease, but only if there is funding to do so. After speaking to Louie's neuro geneticist, she wonderfully agreed to create a journal for the HUWE1 community for free, but we can't let it stop there. We need to keep the ball rolling and keep the discoveries coming. When discussing the group with other parents of kids with the mutation, we asked ourselves what do we want? What's our motivation? Through science and studies, we are hoping to better our kids' lives with discoveries that will help our children and future babies that are diagnosed. Please help us build the HUWE1 Center of Excellence in Baltimore. Through science and medical advancements we can make a safer and more enlightened path for these kids.