Hope on the Horizon: An Expedition for ALS

How an attempt to climb New Hampshire’s highest peaks could change the nation for ALS patients.

It’s hard to believe what Hope on the Horizon has grown into looking back over the last year and a half since it began.  It was a small idea at first, born in the mind of a lifelong outdoorsman who sought to use his abilities in the backcountry to somehow better the world for someone else.

It was the backcountry aspect that came first, before figuring out who it could possibly help, or how.  My sights were set upon climbing the 48 highest peaks in New Hampshire’s White Mountains in a single consecutive trip, entirely on foot.

The 48 peaks that qualified for the objective, known as the 4,000 footers, range in height from 4,000 feet to the 6,289 foot summit of Mt. Washington, the tallest in the Northeast.  While lacking the individual height and altitude of their western counterparts, the Whites compensate with sheer ruggedness, steep and rocky inclines that ascend and descend straight up without switchbacks, distance between summits, and sheer numbers.

In total, the trip would gain and lose roughly 75,000 feet in elevation over the course of 250 miles, more than three times the total height of Mt. Everest.  Add in the fact that the Whites, particularly the Presidential Range reside directly below the convergence of three different storm tracks, resulting in a reputation for some of the worst and most unpredictable weather in the Northeast.  The highest wind speed ever recorded on earth was at the top of Mt. Washington, in the Presidential Range.

It would be an exercise in physical endurance and mental determination on a whole new level, and anyone willing and able to complete it could be proud of their own resolve.  How though, I asked myself, could it be used to help others?

The answer came in the form of another man’s resolve: an example even greater than what it would require to complete the 48.  His name was Charlie Dourney, a well-known and respected basketball and tennis coach.  I had grown up with his grandchildren, and worked for one of his sons.

Charlie had been diagnosed with ALS (Amyotrophic lateral sclerosis), commonly called Lou Gehrig’s disease.  ALS destroys the motor neurons in the brain and spine that allow one to control the voluntary movement of their muscles.  What begins as weakness in the extremities progresses into the inability to lift things, walk, speak, swallow, or even use one’s diaphragm to breathe.

ALS has no cure, nor is it medically understood as to what causes it.  It is essentially a death sentence, most often claiming the individual within two to five years.  Yet the most horrifying aspect of the whole thing is that the mind remains cognizant, sharp, and aware throughout the entire process.

I know for a fact that any athlete or outdoorsman out there must share the same shudder at the thought that I do.  To watch your body, your ability to go up against and endure Mother Nature’s greatest challenges be slowly seeped from you while you sit powerless to prevent it?  It was a fate worse than death, one the doctor who diagnosed Charlie proclaimed that he would not wish upon his worst enemy.

Yet despite this tragic fate, Charlie’s response to ALS was beyond anything I had ever witnessed. Suddenly my efforts in the face of adversity and danger seemed to pale when compared not only to the task he had been handed, but the integrity with which he had continued.

Charlie Dourney’s battle with ALS held no adventure for him, no exhilaration.  Only the struggle.  Only the uphill without the summit.  He faced a challenge that offered no shelter from the storm, no rest from the exertion, and no hope of escape.  Yet not a day came that he ever greeted me with anything less than a smile and a bright attitude, right up to his passing in late 2009.

Charlie may not have known it, but the example he set in the face of such hardship would go on to inspire something great.  The strain it put on his family was evident, and after Charlie passed, his daughter Donna went on to form HARK, Inc., a non-profit in her father’s memory.

Half of HARK was dedicated to fostering “healthy, active, responsible kids” in honor of Charlie’s lifelong work as a coach and mentor.  The other half was dedicated to ALS awareness and support, so that Donna and her family could begin to battle the disease that had claimed their father.

Through Charlie’s struggle, Donna had come to learn that the lack of public understanding of ALS often results in a lack of resources.  Often, patients and families are left to deal with the disease virtually on their own.  Aside from the physical and emotional trauma, the growing costs of medical aid required can quickly become overwhelming, frequently leaving families in bankruptcy or foreclosure.

Donna envisioned a world where this was no longer the case, and she envisioned HARK as the agent to make such a change.  Livestrong had done it for cancer.   HARK could do it for ALS.  When I came to her with the plans to climb the 48 in her father’s memory, our two missions suddenly became one.

The climb quickly became not about summits, but about the resolve it took to climb them.  After all, anyone could quit climbing and return to the comforts of the world the moment they became too tired, or the difficulty became too much.  An ALS patient cannot quit.  They cannot simply stop the hardship or the struggle for a break.

So we would not quit.  The 48 would be climbed without relent, regardless of what stood in in way of succeeding, in hopes that an example could be set.  If others could see through the trip that HARK was willing to take the first steps, and that we were willing to push the limits to help those with ALS, than perhaps they would be inspired to do the same.

If we could impress upon the nation how much resolve it takes for an ALS patient to face this disease each day, perhaps we could inspire their resolve to help make their battle with the disease easier.  Film, we decided, was the best medium through which to reach the people.

We soon brought aboard Alex Williams, a film maker  who could translate our vision into a compelling documentary, one that could be used to spread HARK’s goal through our mission to attain the 48 and begin to recruit the support we needed to truly change the world for ALS.

We built Team Horizon, the five man expedition team that would undertake the challenge of the 48.  We worked steadily and without relent to find sponsorship, funding and support to make our mission possible.  Team Horizon trained heavily, week in and week out in the gym, Catskills, Adirondacks, and Appalachian Mountains.

The process was slow, and at many points discouraging.  More than once it felt as though Hope on the Horizon would never get off the ground, particularly when it was postponed a year.  Yet with the thought of Charlie’s resolve in our minds, we persisted.

Now, over a year and a half later Team Horizon stands less than two months from leaving New Jersey bound for New Hampshire and the Whites.  On the morning of September 23, 2012 Team Horizon will strike trail into the North Country Wilderness of the White Mountains with a bushwhack up Bunnell Brook.

Ahead of them lies Mt. Cabot, the first of the 48, as well as an unwritten adventure not just for mountain summits, but for a better world for those who face ALS.

Hope on the Horizon An Expedition for ALS from VideoTrekker Films on Vimeo.