Gay couple faces ALS together

Jose Cofino (L) and partner Ben Trust (R)

With so much attention being brought to ALS through the many "Ice Bucket Challenges," Frontiers has profiled Jose Cofino -- founder of BeyondALS and how he and his partner Ben are facing ALS together.

ALS has no treatment or cure. And only 20% of ALS cases are traced back through a hereditary link. No one knows what causes the other 80% of cases.

My partner of 16 years, Ben Trust and I figured we would live a long life together. We were both healthy, regulars at the gym, and also loved to hike. We ate the right things and used sunscreen. As with many in the gay community, the way we looked was important. Then, slowly, I began to have cramping in my legs and abs, and twitching in my arms and legs. I thought nothing of it until after two days of hiking and bike riding, I collapsed when I got off my bike.

Several visits to neurologists, including two visits to the Mayo clinic, revealed the truth we were dreading – I was diagnosed with ALS. Ben and I were devastated. In an instant everything changed and little made sense. We didn’t know much about the disease, just as most people prior to the phenomenon of social media ice bucket challenges didn’t. Quickly, we learned it leads to death, on average, in three to five years.

ALS has no real treatment, and no cure. There is not even a definitive test for it. While research has continued and some progress has been made, 75 years after the death of the baseball player that bears its name, Lou Gehrig’s Disease continues to be a killer.

Read the whole essay by Jose at Frontiers.

And head over to BeyondALS - founded by José Cofiño and his partner Ben Trust - which works to raise awareness about ALS and funding for research to find a solution for it.