Then …and Now… DEATH RIDE Tour Inc., President & Executive Director Barry Sopinsky with his son Brandon Sopinsky. The two of them have been enjoying cycling together for over 32 years. Sopinsky said, “the opportunity to do good for people and be able to do that with your family, has been the greatest gift ever”.
A wise man once said “A truly rich man is one whose children run into his arms when his hands are empty”.
Why We Ride - Tzedakah
Over the years I have gained a love and passion for cycling and a desire for TZEDAKAH. Tzedakah is Hebrew for: To Give Back… To be Righteous… To do the Right Thing. The DEATH RIDE Tour… Cycle To Conquer ALS fulfills those needs and since its inception has become a very rewarding experience, not only for myself, but for the over 1200 participants who have conquered the very challenging, 235 miles, 16,500 feet of climbing loop in Southwestern Colorado.
all proceeds are donated to ALS – TDI to support research to find a cure.
WE RIDE FOR PEOPLE LIKE ANN TIPTON
Our Honorary 2018 Angel of Life
Here is Ann in 2013 at DEATH RIDE Tour V riding day three through the valley on the way to Baker’s Bridge, then climbs up Colbank and Molas Passes before finishing in Silverton. Healthy as ever. Ann rode this event with a number of her close friends like, Beth Collins, Wendy Hayes, Chuck and Lorena Ballew, Julie Stoligrosz to name a few.
Unfortunately, Ann was diagnosed in early Spring of 2016 and passed away September of 2017. We will all miss Ann dearly.
WE RIDE FOR PEOPLE LIKE ARTHUR COHEN
Our Honorary 2018 Angel of Life
From pickles to Pickals
Arthur Cohen knew it was "crunch time for an ALS cure".
When life hands you lemons, you're supposed to make lemonade. But pickles were more Arthur Cohen's thing. Over the years, his homemade, garlicky pickles had become an obsession among his family, friends and neighbors. So when Arthur was diagnosed with ALS in 2014, selling his Pickals to raise money for an ALS cure seemed like a natural. Pickals was born.
Since then, Arthur's crunchy, small-batch pickles have raised hundreds of thousands of dollars for ALS research and patient care. Profits from every jar benefit organizations actively working on an ALS cure, as well as those helping patients and their families navigate this cruel disease
Arthur's brave battle with ALS ended in August, 2017, but his legacy and mission live on. Our goal is for Pickals to symbolize the fight against ALS and to create a sustainable funding source that helps lead to a cure.
Join the fight to beat ALS - try Arthur's Pickals. If you love them, please tell your friends. Just have a breath mint first.
WE RIDE FOR JON “BLAZEMAN” BLAIS
Jon was born and raised in southern New England and was always an elite and multi-sport athlete. Even a death sentence in the form of Amyotrophic Lateral Scierosis (Lou Gehrig Disease) in May of 2005, at the young age of 33. He accepted his diagnosis and decided to do incredible things with it. He began to wage War ON ALS® from the beginning. This was his way of dealing with the deadly disease: this is how he lived out his days …fighting for research and raising awareness.
Jon competed in triathlons for 20 years but never an Ironman – especially Kona in Hawaii. On October 15, 2015, only 5 months after being diagnosed with ALS, Jon became the only individual with ALS to complete an Ironman, finishing in 16:28:56. Jon crossed the finish line with the how famous “log roll” and has been graciously performed by countless athletes as a symbol of hope, and a means of raising awareness for ALS. For the next couple of years Jon’s focus was the War On ALS. Jon died on May 27, 2007 and has left a memorable mark on all who knew him.
A Poem from the Blazeman
More than your neighbors.
Unleash yourself upon the world and go places.
Giggle, no laugh
No…stay out past dark
And bark at the moon like the wild dog that you are.
Understand that this is not a dress rehersal.
That this is it…your life.
Face your fears and live your dreams.
Take it all in.
Every chance you get…
And by all means what ever you do…
Get it on film.
A video letter from Ken Woo
WE RIDE FOR Bill HALSELT
2017 -Doris Rigoni and David Halseth riding in memory of David's Dad, Bill Halseth
We Ride For People Like Michael Cimbura
In January of 2015, Michael Cimbura’s entire life changed. Mike was diagnosed with ALS. Michael and his son Aiden came to the 2015 DRT 6 as a guest speaker to discuss living with ALS. Michael an ex racing cyclist is a husband and father of three wonderful children. In 2016 Mike’s condition had deteriorated greatly. Now confined to a wheel chair, breathing through a ventilator and speaking with a computer. Mike wanted to participate in the 2016 DEATH RIDE Tour VII. Here is the story of that accomplishment.
You see Mike before ALS was a avid, trill seeking cyclist. Within 10 months of Mike and his son Aiden’s attendance to the 2015 DEATH RIDE Tour 6, Mike was confined to a wheel chair, breathing through a ventilator and speaking with a computer. In early Spring of 2016, Mike sent President & Executive Director Barry Sopinsky an email asking if he knew anyway to get him on a bike to ride the DEATH RIDE Tour in June of 2016. Barry really had NO idea how to accomplish this. Barry knew that Mike could not ride a traditional tandem or incumbent bike because he could not sit up. It had to be a kind of wheel chair bike.
Barry had a friend and past DEATH RIDER Mike Dunky who had rode the DEATH RIDE Tour in 2013. Mike how was a partner in Little Machine Beer, a great new brewery in Denver. Barry was there one night talking to Mike about a fund raising event and mentioned Mike Cimbura and his idea to ride. All of the sudden Dunky said, “have you ever seen the Bootlegger”? Sopinsky said, “what in earth are you talking about”? Dunky then proceeded to show Sopinsky a picture of a cargo bike built to haul kegs of beer.
As soon as Sopinsky saw this bike he said “yeah, that will work for sure”! Dunky said that is was built by a guy named Zach Yendra. Zach had worked on the bar in Little Machine. Not long after that meeting Sopinsky contacted Zach who’s shop was in Fort Collins. Chris Baker, Mike's neighbor, and Sopinsky went to visit Zach and explain their crazy idea to take an ALS patient on a 3-Day, 235 Mile Tour through the San Juan Mountains over 5 passes. Zach being the trill seeker he is, just like Mike accepted the challenge and with only 5-6 weeks to customize the keg hauler into an ALS patient hauler, Zach got started. A custom race car seat was purchased to be mounted in the cargo area. An additional battery was installed to run the ventilator. Mike and Zach have ridden the DEATH RIDE Tour in 2016, 2017 & 2018 along with the RED ROCKS EXTREME Challenge and plan on riding their 4th straight DEATH RIDE Tour in 2019.
Mike’s entire family came to support his quest in 2016, wife Nicole, children Seide, Aiden & Elle. Mike’s parents and in-laws were there along with Zach’s wife Rachel and daughter Hadley and Zach’s parents. It turned out to be an amazing feat and very successful. Mike and Zach have ridden the DEATH RIDE Tour in 2016, 2017 & 2018 along with the RED ROCKS EXTREME Challenge and plan on riding their 4th straight DEATH RIDE Tour in 2019.
What’s up for the dynamic duo? Well, Mike would like to set up an ALS Residence in Colorado with his Non-Profit, WithStandALS – Tax ID 82-2877502. If you would like to make a donation to the cause, please do so below.
What’s next for ALS Warrior Michael Cimbura and his trusty “Bootlegger” pilot Zach Yendra. Well, hopefully their 4th in a row DEATH RIDE Tour and continued support for an ALS Residence
in Colorado like the Steve Saling Residence in Chelsea, MA. Check out: www.alsr.org for more information.
We ride for people like Gene Zumberge
We Ride Because of People Like Jim
January 5, 2016
I do want to tell you that I am a Colorado native and have ridden for over 37 years. I have done a lot of organized rides and your ride was without exception the most well supported, organized and friendliest I have ridden. And it's one of the most beautiful routes I have peddled.
This year I have enlisted 3 new gentlemen whom have many years of cycling experience but have never done this challenging of a course. All 3 are lawyers including Judge Dennis Graham. They are really great people.
Two years ago doctors finally figured out my Aunt had this horrible disease. She is somehow still hanging on but can't communicate any longer.
My Aunt Marlene Holdaway is my moms brothers wife. It's so devastating as you well know to see a loved one robbed of the quality of life we all hope to have.
I'm really looking forward to the ride Barry!
Sadly Marlene Holdaway died on Saturday April 9th and Jim and friends will be riding the 2016 DEATH RIDE Tour in her memory.
WE RIDE FOR MY DAD, IRVIN SOPINSKY –
OCTOBER 31, 1921 – SEPTEMBER 26, 1963
ALS also known as the Lou Gehrig’s disease is a devastating, crippling and always fatal disease. The diagnosed are often facing years of suffering as their bodies progressively deteriorate. Since 1869, 20 plus million people have suffered and then died of ALS including my father.
Irvin Sopinsky died of ALS at the age of 44 when I was 13. He battled this horrible disease for 7 years. ALS is a disorder that affects the function of nerves and muscles. Based on U.S. population studies, a little over 5,600 people in the U.S. are diagnosed with ALS each year. (That's 15 new cases a day.) It is estimated that as many as 30,000 Americans have the disease at any given time. According to the ALS CARE Database, 60% of the people with ALS in the Database are men and 93% of patients in the Database are Caucasian.
Most people who develop ALS are between the ages of 40 and 70, with an average age of 55 at the time of diagnosis. However, cases of the disease do occur in persons in their twenties and thirties. Generally though, ALS occurs in greater percentages as men and women grow older. ALS is 20% more common in men than in women. However with increasing age, the incidence of ALS is more equal between men and women.
There are several research studies – past and present – investigating possible risk factors that may be associated with ALS. More work is needed to conclusively determine what genetics and/or environment factors contribute to developing ALS. It is known, however, that military veterans, particularly those deployed during the Gulf War, are approximately twice as likely to develop ALS.
Half of all people affected with ALS live at least three or more years after diagnosis. Twenty percent live five years or more; up to ten percent will live more than ten years.
There is some evidence that people with ALS are living longer, at least partially due to clinical management interventions, riluzole and possibly other compounds and drugs under investigation.
I have always struggled with the lack awareness and resources there were to help those with this insidious disease, for their care takers, and dollars for research to find a cure for it. Thanks to the "Ice Bucket Challenge", there now is a much grater awareness and some research $$, but it's just the beginning.
Your support as a participant or as a donor is so very much appreciated. A true meaning of TZEDAKAH.
Barry Sopinsky, President & Executive Director
WE RIDE FOR STEVE GLEASON – NO WHITE FLAGS
At the recent Super Bowl on February 5, 2012 – New Orleans Saints – Steve Gleason’s story told.
STEVE GLEASON NBC SUPER BOWL FEATURE
Steve Gleason played for The New Orleans Saints from 2000-2008. As a counter-culture athlete who spent his off-season adventuring in third world countries, he will always be remembered for his blocked punt on the night the Louisiana Superdome reopened for the first time after Hurricane Katrina.
In January 2011 Steve was diagnosed with ALS, considered a terminal neuromuscular disease. Beyond his faith that there is a solution to heal, it is his mission to show that patients can not only live but thrive after this diagnosis. In doing so, he hopes to inspire others to do the same. With that in mind, Steve and his wife, Michel, formed “Team Gleason” to help him accomplish those goals and more.
Just weeks after his diagnosis, Michel his wife found out she was pregnant.
Knowing that time was of the essence, Gleason started making video journals — love letters, really — for their unborn child. He recorded himself reading children’s books, talking about religion, love and even how to build a campfire.
Steve and his wife formed the Gleason Initiative Foundation, a charitable 501c3 Non-Profit with the mission to:
- Help provide individuals with neuromuscular diseases or injuries with leading edge technology, equipment and services. Steve and Team Gleason recently opened the Team Gleason House for Innovative Living in New Orleans. It is only the 2nd of its kind in the world. The residence is equipped with the latest computer-operated technology to allow individuals with ALS the highest level of independence possible.
- To create a global conversation about ALS to ultimately find solutions and an end to the disease. As an example, Team Gleason hosted a summit in 2013 in New Orleans that included world leaders in ALS research and cutting edge technological developers. We believe it sparked a new global conversation around solutions to ALS across the medical and technology boundaries. The result of the Summit was the largest single collaborative research effort in the history of ALS, Answer ALS.
• To raise public awareness toward ALS by providing and documenting extraordinary life adventures for individuals with muscular diseases or injuries. As avid adventurers, Steve and Michel wanted to continue pursuing life adventures for themselves despite Steve’s diagnosis and found that many people with ALS were choosing to accept their assumed limitations. Through Steve and Michel’s inspiration and tireless work, Team Gleason has helped hundreds of people with ALS experience adventures they never thought possible after their diagnosis
WE RIDE FOR PEOPLE LIKE OJ BRIGANCE
OJ Brigance was a force in the 2000 season for the Baltimore Ravens; he made the first tackle in the Super Bowl against the NY Giants. But in 2007, at the age 37 he was diagnosed with ALS. Still O.J., with his wife and his team, communicates in a very profound way.
After experiencing the emotional, physical and financial resources it takes to simply live each day with ALS, O.J. and Chanda made a decision that would change their lives once more, in 2008 the couple created the Brigance Brigade Foundation to equip, encourage and empower people living with ALS.
While the ultimate goal is a world without ALS, there are people who need help now. It is the understanding of that need that fuels the Brigance Brigade Foundation because together, All Things are Possible. www.brigancebrigade.org
WE RIDE FOR PEOPLE LIKE STEVE SALING
Diagnosed with ALS October 13, 2006. He moved to Boston from Italy in the fall of 2005 and noticed trouble holding a pen or pencil. Steve had a fulfilling career as a landscape architect. After a short time, Steve retired to enjoy his remaining months of unassisted mobility. Early in his transition to quadriplegia, Steve became partners with Barry Berman, CEO of the Chelsea Jewish Nursing Home to create the world’s first fully automated, vent ready, skilled nursing residence where the severely physically disabled have the opportunity to maximize their independence and productivity. He founded the ALS Residence Initiative (ALSRI) to advocate the replication of these homes elsewhere.
This is exactly what our own pALS – Michael Cimbura and his WITHSTANDALS Foundation wants to do in Colorado. For more information on Steve and ALSRI go to: www.alsri.org
WE RIDE FOR PEOPLE LIKE PETE FRATES
Pete Frates was a former Captain of the Boston College baseball team and a professional player in Europe. In March of 2012 at age 27, Pete was diagnosed with ALS. Pete was one of the people who helped spark the famous ICE BUCKET CHALLENGE of 2014 and raised roughly $220, 000,000 for ALS Research. Now the 32 year old Frates continues to work hard to raise awareness for ALS – With Every August Being Ice Bucket Challenge Month - Until There Is A Cure
WE RIDE FOR PEOPLE LIKE MONTE CLUTE
By Mitchell Clute
On May 27, 2011, I set off with my wife Catherine and son Kieran on an 800-mile bicycle journey from our home in Ft. Collins, Colorado to Iowa City, Iowa. Our journey, Monte’s Ride to Defeat ALS, was a fundraiser in honor of my father, Monte Clute, who lost his own battle with Lou Gehrig’s disease in 1995.
Earlier that year in 2011 I was contacted by Barry Sopinsky, President & Executive Director of the DEATH RIDE Tour Inc., Charity Cycling Events to see what Monte’s Ride was all about. Barry and some of his team even came out to ride the first 50 miles with us and as in the tradition of the DEATH RIDE he supplied us with a flag to carry in honor of Monte.
Through our grassroots efforts, we raised more than $8,000 via Monte’s Ride, with most of our donations coming through our website, www.montesride.org, which chronicles our experiences in the course of planning, training for and completing our ride.
Monte’s Ride was my way of honoring my father’s spirit of adventure and joyous attitude toward life.
Why a bike ride? In spring of 1979, when I was thirteen, my father decided that our family—including my mother, Bonny, and my younger brother, Shannon, who was 9 at the time—would ride bicycles from our home in Colorado to our grandparents’ home in Michigan. We had never done a bike tour before, but in June we hit the road, following the route my father had planned. It took a month, but we made it.
Monte’s Ride to Defeat ALS followed much of the route of that long-ago adventure. With each mile we rode, I felt closer to my father’s spirit, while at the same time my bond to my own son grew stronger. We encountered our share of challenges along the route—days of relentless headwinds, when our top speed never even reached 10 miles per hour; extreme, unseasonal heat, with temperatures in western Iowa topping 100 degrees for three consecutive days; flooded rivers and unfriendly roads that forced us from our planned route; in addition to all the expected pains, strains and discomforts from spending 14 straight days in the saddle, riding 60 miles a day.
But whatever challenges we faced, they paled in comparison to what someone living with ALS faces every day. I knew from my father’s experience that simply trying to speak a sentence or place one foot in front of the other can be a more difficult task than anything we encountered. The daily bravery of those living with Lou Gehrig’s disease served as a constant inspiration as we rode.
Our journey is also proof that anyone can make a difference. I had no fundraising experience when we began, and the clear majority of the funds we raised for the ALS Association came through small, personal donations from friends, family, and those who found our website through our media exposure. At times, it was painful to revisit my father’s illness so intimately, but my spirits were buoyed by the many strangers who contacted us to tell of their own connection to ALS. For such a ‘rare’ disease, it’s amazing how many lives ALS has touched.
So, if you’re considering your own grassroots fundraiser for ALS research, don’t underestimate the impact you can have, both on the lives of those currently living with the disease and on those who have not yet received a diagnosis. Just weeks after we completed Monte’s Ride, newspapers wrote of new research linking ALS to a particular gene mutation, suggesting the possibility of effective treatments in the future.
Those potential treatments come too late for Monte, and for thousands now living with ALS, and it’s still far too early to even dream of a cure. Still, every dollar raised is meaningful. Your fundraising efforts can change lives. When our Monte’s Ride crew rolled into Iowa City, 14 days and 800 miles from our starting place, our own lives had certainly been transformed.
Mitchell Clute is a Colorado resident and 1992 graduate of the Iowa Writer’s Workshop (MFA, poetry). He works as a producer and editor for the Boulder, Colo.-based multimedia publisher Sounds True, and lives in Ft. Collins with his wife and three children. He can be reached at email@example.com
If you want to read a heart warming story about another cyclist riding in memory of his father check out – www.montesride.org I came across this while on the ALS site and contacted Mitchell. I plan on starting off with them on May 27th to ride the first of their 12 day - 800 mile adventure. Even Mitchell’s 71 year old Mother, Bonny will be on the ride. You must read Monte’s article that was published in Inner Self just months before his death. That Saturday when I contacted Mitchell just happened to be the 16th anniversary of Monte’s death. Something just brought us together that day – something more than cycling.
As a participant of the DEATH RIDE Tour you are making a commitment to raise a minimum of $300 in donations to support these worthwhile charities.
I certainly hope that you will consider joining our small group and enjoy some of the most beautiful scenery in the world while at the same time challenging yourself to go just a bit farther than maybe you have ever gone before.
I invite you to read the story below from Bicycle Bob Gregorio - the original Death Rider who rode this loop for the first time in 1979 and 16 times since then.
President & Tour Director
The Story of the Death Ride
By Bicycle Bob Gregorio – Professional Cycling Mechanic – Ralley Racing
I read through the article, it's mostly accurate, although I did notice a few errors. It actually did begin as a 2 day ride, organized by the Ft. Lewis College Outdoor Pursuits department. 1979 was the year. An invitation was floated about the Durango cycling community, of which I was a part. I can't claim credit for organizing the first year, as the article seemed to indicate, as I had no direct relationship to Ft. Lewis. We rode counterclockwise, up Hesperus hill and all the way around to Ouray on day one, then over the passes to Durango on day 2.
The name "Death Ride" was attached to the 2-day version by Blake Knoll, who owned and managed one of the top bike shops back then. It was considered so hard as a 2-day that he figured that we must have ridden to the edge of death, made a deal with the devil, and returned to Durango as zombies…
In 1980, some of the handful of us who had done the 2-day version decided that it was possible to do it in one day. We chose the "full moon in June" as a good day for the challenge. It became a yearly endeavor, always around the moon in June. The riders who completed that 1st one day ride were Gerry Roach, Andy Schoembs, Forrest Yelverton, Peter Willing and myself. It took us 18 hours, started before dawn, ended after sunset. It truly earned the name "Death Ride" as a one day. We had never heard of the Markleyville Death Ride 'til years later.
Each year, I (we) would have dozens of riders claim that they were training for the Death Ride, and would be ready on the full moon in June. Of the dozens who made the claim, normally half would actually show up for the traditional 4AM start. Of the 6-10 who would actually start, about half would finish. The 3rd year, I was actually the only one who finished. Taking 19:20 to complete, I rode the part from Mancos to Durango on raisins and beer, as that was all our follow vehicle had left…
By the mid and later '80s, it devolved into a race of sorts, to set the fastest time. It was so hard then, and the attrition rate grew because of this mentality. In '86, the time to beat was set at 13:39, which seemed unbeatable. In '87, 4 of us set out to beat it. We had a support guy who handed us up mussettes of food; we peed off the bike, just like the pros. One guy dropped at Dallas Divide, another on the way down the Dolores valley near Stoner. The last 2 of us, Stewart Geer and myself, rode in the rest of the way and finished it in 12:53. As far as I know, it's never been done any faster, although, the clandestine nature of the ride means nothing is official…
Mark Witkes did the ride with us in the mid 2000's, when I returned to the ride and promoted it as a team effort. I recall him doing the ride twice, although it could have been more, as I didn't do all the rides myself. Mark was such a great runner, but really not a cyclist per se. He would normally ride a little in front, off to one side, or behind the group as he was uncomfortable drafting closely in formation. He was so strong and positive, that he inspired us all.
I'm proud to say that I started and finished the ride each time I attempted it, 17 times in all. Once, I actually decided to quit… at Society turn near Telluride. Had my bike loaded in the sag wagon, had taken off my shoes… But when I saw the riders pulling away to begin the ascent of Lizard Head, I put the shoes back on, called for my bike, and pushed on.
You see, the Death ride is more than a cycling challenge; it's a test of will. A conversation with one's own faith of spirit to endure. The confidence gained by persevering in the face of hardship and exhaustion serves one in all facets of life.