An App to Help Bring an End to ALS

I met Steph Courdin in the summer of 2015 at an Ice Bucket Challenge to raise awareness and funds for ALS. I was dressed as “Super Carpe Diem Woman,” a goofy super-hero who’s ‘power’ is to live life fully. Steph, a photographer, was taking pictures of the event with a very fancy looking camera.  He was smiling as though he didn’t have a care in the world. The fact that Steph was in a wheelchair was my only clue that he might have ALS himself.

Though it’s easy to ‘live life fully’ when you have a fully functional body, I believe the real super-heroes are people like Steph who set that example, despite an ALS diagnosis. Steph doesn’t let the disease stop him from hitting the trails, traveling, and most recently, “rolling” his daughter down the aisle on her wedding day, via a standing wheelchair.

ALS, a fatal, degenerative disease, also known as Lou Gehrig’s Disease, gained national attention during the Summer 2014 Ice Bucket Challenge mania. Until then, it was a comparatively unknown disease with little progress made towards a cure. It’s encouraging that the money raised from the ice bucket challenges are making a difference, but the cure won’t come overnight. In the meantime, Steph had an idea to help.

In 2015, Steph, in addition to living a full and active family life, created the non-profit ALS Never Surrender Foundation aimed at helping with research and ultimately finding a cure for ALS.  Having a background and experience with data analytics, Steph had the idea of creating a mobile application that would collect data pertinent for ALS patients. By monitoring the progression of patients as well as their treatments, researchers and doctors can gain valuable knowledge and feedback about treatments that will slow or even stop the progression of symptoms.

Steph shared his idea with some contacts in San Diego and in the Fall of 2016, the designs and use-cases became a reality with the availability of a beta version of the ALS iNVOLVE application. In January of 2017, students from Georgia Southern University pitched in to finish the first version.  

To help fund this massive undertaking, Steph initiated ‘Art4the Cure’ – a group of 42 artists from 9 countries and 14 states who have donated art to help raise money for the cause. Additionally, Steph started a ‘Faces of ALS’ portrait series to feature and highlight others who are surviving and thriving despite ALS.

Steph’s courage, determination, and will to ‘never surrender’ are an inspiration. For those of us who are healthy, we are reminded not to take that health for granted. And for those who do have ALS, Steph is a reminder that living fully is always possible. He’s a leader who is not going to let ALS stop him from living his dreams and finding innovative ways to move the world closer to a cure for ALS. He is, in short, the super-hero who shows us all how to live life to the fullest.

Please help Steph and ALSNeverSurrender launch this life-saving application by donating at http://alsneversurrender.org/donate.  If you have ALS or know someone who does, get involved by using a beta version of the application.