“Success largely depends on two factors. Number one is each individual person’s decision to take action. Number two is our interaction with each other and support of each other in this fight.”
Kyle Bryant, a spokesperson for Friedreich’s Ataxia Research Alliance (FARA), spoke about the search for a cure for a condition that he lives with every day. But Kyle could have been speaking about any challenge—big or small—that any of us face.
Success depends on our decision to take action, and the support we receive to keep us going.
Let me tell you a true story to illustrate that point.
Patrick Cogan lives with Friedreich’s Ataxia (FA).
When he was first diagnosed in December 2010, the news was hard to process for both him and his mother. According to his mom, Helen, all she could think was: “Patrick can’t have that.” Eventually, she said, she got to a point where she “just had to move forward.”
Friedreich’s Ataxia is considered an evil cousin of ALS, which is better known as Lou Gehrig’s disease. Both are neuro-degenerative conditions, meaning they affect the way the brain communicates with the muscles. Because they’re degenerative, both FA and ALS get worse over time. It’s estimated that FA affects between 1 in 50,000 and 1 in 100,000 people in the U.S.
As Patrick describes it,
“Basically your brain tells you to go in a straight line and you end up to the left, in a wall. Or your brain tells you to pick up a glass and you spill half of it before it ever gets to your mouth.”
FA is considered life-shortening, because it is associated with heart and lung disease. The average life expectancy for those with the condition is between 55 and 65 years.
But Patrick doesn’t view his condition as a negative.
Instead, he looks at it as motivation to do the things that are important to him. In 2012, as part of team Cogan’s Heroes, he set some pretty lofty goals for himself:
- to complete a 100-mile ride on a recumbent trike
- to complete a triathlon
In late June of that year, he crossed the first one off the list.
Again, as Kyle says, “Success depends on our decision to take action.” Or, as Patrick puts it, “Live each day to your fullest. Don’t focus on the things you can’t do.”
For more on Patrick’s story, click here or visit ProjectWheels.org
