I am Daniel Barvin

For the first 20 years, I was the child and nephew of ALS. As we didn’t have knowledge of Familial ALS, we thought each case of ALS was sporadic. After realizing my father carried the c9ORF72 gene mutation, I suddenly became at risk. I rose to the challenge and had difficult conversations with my wife and loved ones and moved forward with testing. My results came back positive and this gave me a mission. I needed to help others and myself deal with this newfound burden. My first goal was to end this disease for future generations. We were able to do that through IVF and PGD. We are now proud parents to a wonderful son, Kai. I now fight to educate others who may be at risk so they can know their options, find a community and take action. I AM ALS, along with other gene-positive volunteers like myself, are working to create a world where there is no stigma against being a gene carrier, where we can all be strengthened by sharing our stories.