Hiking to save lives | AspenTimes.com

Hiking to save lives

Roger Marolt

Aspen, CO ColoradoHike for Hope is a local event to raise money to fight Duchenne Muscular Dystrophy (DMD) and awareness to show those afflicted with the disease that we care. The degenerative nature of the disease is ruthless. It attacks children. There is no cure.The race is long and painful. The disease was discovered in the 1850s and continues to ravage unimpeded today. Breakthroughs have been few and far between. In 1989 the gene dystrophin was identified which increased diagnostic measures. The use of corticosteroids may help some children walk independently for two to three years longer before being relegated to a wheelchair, but children afflicted with the disease are still dying, without a chance for beating it. The outcome is always the same. Nobody in the race has caught up with the killer out in front that doesn’t run fair.Nonetheless, people all over the world continue to push hard for a breakthrough. Those concerned with this cause are not pacing themselves. Although the distance is indeterminate with no end in sight, people dedicated to beating this childhood killer are sprinting. They continually work through the pain in their efforts because they cannot rest while this disease continues to gradually paralyze children before eventually stealing their lives.Dr. Brian Tseng, a leading researcher for DMD, recently told me in an e-mail exchange that all of his clinical and research mentors discouraged him from pursuing his career path. “You can’t do anything for those kids,” they told him. Yet, because “these kids are still dying by their mid-20s and that is simply tragic and unacceptable,” he signed up anyway.”Research is a process where scientists must accept getting kicked in the teeth/gut/ego every day, and never give up,” Tseng says. “Every experiment that fails or gives a negative result can be extremely deflating, but that is a researcher’s world … My lab has had many disappointing experiments, but I truly believe every dead end gets us closer to what we want and need.”Imagine racing an unmarked course where you find the way through trial and error by running along spurs only to find that they go nowhere, slowly learning where the correct path goes only by experiencing where it does not.I discussed progress along this course with Dr. Tseng. He told me “progress” in research is a loaded word because it is like potential. “Potential,” he said, “Is a fancy way of saying that it hasn’t been done … yet.” And at that point I understood.When we hike up Buttermilk next Saturday morning, there will be a feeling of accomplishment with each small step we make. From the moment we leave the starting line behind, we begin to gradually close in on the finish, so far in the distance that we can’t see it. But, we know it is there. This isn’t an act of faith; we know there is an end! And not only is there an end, but one filled with joy and celebration.With each stride, deep breath, and contraction of our muscles, we will know the exhilaration of becoming stronger; physically, mentally, spiritually. We should be thankful that we are able to make ourselves so temporarily uncomfortable with the hope of making others’ pain as transient in the future. Moving a human body with purpose is accomplishing a great deal more than most of us ever think about. Thoughtlessly, it makes us feel good. Motion releases the potential of our energy.Those intimately connected with DMD research understand that the thing that keeps us all going is potential. The incredible potential in their work is seeing countless children throughout future generations celebrate adulthood. It is believing that, one day, no parent will suffer, because all kids will properly be able to take for granted a run through the park, wasting an afternoon on a bicycle, or the joy in being a part of the team.The trickiest part about potential, though, is that it is extremely difficult to spot. It can be so obscure and elusive that even those who have sighted it can easily be convinced that they have been deceived by their own vision. This is where each of us can help. With every small step, every bit of forward motion, we get closer to a solution and the vision becomes clearer. As more of us see it, we begin to believe.When we come together as a community for this year’s Hike for Hope, we will demonstrate to each other that we believe in the potential for a cure. This is tremendous. An experiment fails, but hundreds gather to celebrate the effort; that’s progress! To a boy confined to a wheelchair, the image of athletes running up a mountain, because they share his vision, is a remarkable breakthrough. To researchers working tirelessly for a cure, financial support is a vote of confidence. To families desperate for answers, a smile, a hug, your presence are enough … for now.It is the trait of a great person who recognizes the value in a meaningful reward deferred over the fleeting satisfaction of immediate payback. Each of our investments in this cause can be small, yet the potential for an extraordinary payoff can be realized.With the humility of a man fully aware that the odds were against him and his patients from the start, Dr. Tseng told me, “If I fail, or do not have enough impact, I will be sure to prepare as many bright young minds as possible to get into this fight.”His words are inspirational in their straightforward honesty.You are prepared. Get into this fight.Hike for Hope takes place on Buttermilk Mountain next Sunday morning, Jan. 14, at 7:30 a.m. For more information and registration, go to their website: http://www.geocities.com/hikeforhopemd/index.html. One hundred percent of your donation will go directly toward research to save children’s lives.