24 Hours in the Enchanted Forest: A Race to SolveCFS
By Claudia Goodell
When I was asked to write my report on 24 Hours in the Enchanted Forest: A Race to SolveCFS (24HITEF), I began to think in rewind mode. Recollecting the events leading up to the coordination of the event led me to thoughts about why I wanted to form a benefit event for chronic fatigue syndrome (CFS) in the first place. Those thoughts brought me further back in my own past. I struggled to lay a foundation for you without including my own back story, but then I realized that this year, 2010, the year of the inaugural 24 HITEF is exactly 24 years from the time I first became sick.
In 1987 my husband Lenny and I had been dating about a year when we purchased some inexpensive mountain bikes and embarked on a new sport together. I had experienced some odd health issues for over a year following an infection in the spring of 1986, but at the age of 26 I didn’t think too much about it. I was a divorced single Mom, and had decided to go to college and get a degree. The next 13 years were spent earning my bachelor’s and master’s degrees, and establishing a professional career as an audiologist, followed by a stint in pharmaceutical sales. I was well on my journey to success in the professional world, and enjoying a full and active life, but unaware of the physical decline I was experiencing.
Lenny and I elevated our involvement in the sport from a recreational level to competitive one. We were enmeshed in the mountain biking community, and so were most of our friends, at the time in 2005 my symptoms had progressed to the point that I could no longer work. After nearly 20 years of unexplained symptoms, dozens of medical appointments and a plethora of tests I still had no diagnosis. I had exhausted my short-term disability, and was applying for my company’s long-term disability, which would have paid me 75 percent of my annual income for life. My employer, one of the top five pharmaceutical companies in the world, was less than helpful, telling me that a diagnosis of CFS would get me three days of sick leave, and that if I had cancer this would be much easier. In the midst of a thoroughly depleted physical state I was struggling to find doctors, set appointments, get myself to those appointments and tests, manage my health records, and understand what was happening to me. I was phoned weekly by the case worker assigned by my employer. I had exhausted all medical leave, unpaid leave, and vacation, and eventually I was forced from my employment, having been told that if I did not return to work it would be considered abandonment of job. I resigned, but still unsure of the true cause of my symptoms, ignorant about the prognosis of CFS, and still in denial, I thought that if I could stay home and rest for a few months I might still recover. Less than a month after resigning, having excluded all other possible medical explanations for my symptoms, and meeting all the other diagnostic criteria for CFS, I finally received the diagnosis of CFS and Fibromyalgia. I wasn’t given any treatment options or really any advice except to keep doing what I was doing. After about a year of rest and countless more doctors’ appointments I found and became involved with the CFIDS Association as a patient and donor, and began to learn from them as much as I could about my illnesses. They became my main source for current scientific information about CFS.
This illness has a way of stripping away ones identity through the loss of ability to do many of the things that bring enjoyment. Since my life and my marriage had been built around the sport of mountain biking, this left a huge void for me. I felt bitter when I attended events, knowing I could never compete again, and resentful that my husband and everyone else still could. I have never been a good spectator, and although I physically couldn’t tolerate the activity I still wanted to participate. Because cycling has been part of my physical make-up for so long, I took up road cycling in place of mountain biking. My body craves the fitness, and some blood pressure/heart rate related symptoms are reduced when I exercise in a seated position as opposed to an upright position. I enjoy the social aspects of it, but I have to pace my riding schedule with at least three days of rest between rides for recovery. I am convinced that if I had to work I would not be able to ride. People with CFS (PWCs) are often forced to choose between activities to keep symptoms from flaring. Things as simple as grocery shopping and laundry are activities that contribute to flares. I am fortunate to still be able to ride. Throughout my diagnostic period and after resigning from my job, Lenny continued to compete, and even began competing in endurance mountain bike events, so we have remained heavily involved in the cycling community.
Since my diagnosis I have felt compelled to organize a cycling event to benefit CFS. I have asked local bike shops to sponsor an event, and even spoke to the regional director for the MS 150 bike event for advice. The local bike shop would provide sponsorship in the form of financial support, but said that I would be responsible to organize the entire event. Lenny reminded me that I was not healthy enough to take on anything of this magnitude. I was told that liability was extremely high for events like these, and that interest would likely be low because the local area was already saturated with cycling related benefits. One sure way to get me to do something is to tell me it can’t be done.
Then in October of 2009 Lenny came home from a race in the Zuni Mountains near Gallup, New Mexico, where he had talked with Lindsay Mapes, a Gallup resident, owner of Turquoise Timing and Events, and race director for the 12-hour race called Dawn ‘Til Dusk. Lindsay had been attending an annual party there and had stopped a few of the racers to ask them some questions. She wanted to know what type of event they would prefer if she started a new race in New Mexico. They unanimously requested a 24-hour mountain bike event. When Lenny came home he told me about the conversation and said, “You should call Lindsay and ask her if she would be interested in making it a benefit for CFS.” So that night I sat at my computer and typed an email to Lindsay. I explained who I was, that I had met her previously, and that my last race was one that she organized, but that I seldom even ride a bike now because of CFS. I explained what CFS is, and asked if she would consider making the new 24-hour event a benefit for this illness, with proceeds going to the CFIDS Association, and why I thought that was important. I was about to close the lid on my laptop and go to bed when her reply came in. She said, “This email has caught me off guard. A lot of thought went into that, and it was very well crafted. I'm not sure if you already know this and that is why you chose to email me, but last year I was diagnosed with CFS. I battle with this almost every day. In fact, I am still in New Mexico because of CFS. I don't have a regular 9-5 job anymore, partly because of my health. I'm trying to eke out a living by doing events, which totally exhaust me, but it's what I know. I would love to do an event. Let's talk more about what you are envisioning.” After reading her reply at least twice, I sat at my computer and cried – tears of joy and sadness.
One phone conversation later the planning commenced. A third friend and avid 24-hour mountain bike racer, Lisa Wishard, joined our forces to work long distance from Las Cruces, NM, and full coordination of the first annual "24 Hours in the Enchanted Forest: A Race to SolveCFS" was formed. Our goal in developing this event was twofold: We wanted to set New Mexico’s first 24-hour mountain bike race apart from all other similar events, adopting a thoroughly New Mexican theme, and we wanted to create as much awareness for CFS as possible, and with accuracy. Originally my role was to be as a liaison between the event and the CFIDS Association, but it quickly developed into more, and I assumed the duties and title of public relations coordinator. Later we added Donna James as Volunteer Coordinator, Connie Goodell as Activities Director, and just before the event we were joined by three other staff members, Stacey Hollebeek - packet pickup coordinator, Jessi Miller - course marshal coordinator, and Melanie Van Dorp kid’s activity coordinator. Brian Smith, Board member for the CFIDS Association was instrumental in all things related to CFS throughout the planning stages, and during the event, as well as assuming the respected role of Official Race Starter. Although there were only a handful of staff members organizing the event, there were many, many hard working volunteers, and several generous sponsors, without whom this event would not have been possible.
We owe a huge thank you to our generous sponsors, most of whom are New Mexico based: High Desert Bicycles, Specialized Bikes, Cane Creek, Santa Fe Brewing, Clover Leaf Environmental Solutions, Ergon, Hammer Nutrition, Bikeworks Albuquerque, Voler, Relax Pack, Harlot, Clif Bars, Lara Bars, Vitamin Cottage, Stapes, White Industries, Big Mikes Rentals, City of Gallup and Turquoise Timing Events.
Some of the ways we generated funds for donations include the mandatory $25 per registered racer and through the sale of reserved on-course race pits for $20 each, and through proceeds from the sale of hand-etched mugs. Tiffany Buntin, a fibromyalgia patient, and her husband Alain Buntin of Scottsdale, AZ came to the race and sold their Relax Pack products with most of the proceeds being donated to SolveCFS. They also donated green SolveCFS awareness bracelet for each of the 96 winning racers, as well as five herbal neck wraps for us to give away as prizes to the racers with the slowest laps. We hosted a Huffy Toss contest, in which participants paid a $5 donation for a chance to throw an old Huffy mountain bike as far as they could. The person who threw it the longest distance won a brand new cruiser bike, which was donated by Bikeworks, a local Albuquerque bike shop.
One local Albuquerque patient, Julie K. sent a letter to friends and family prior to the event asking for donations through the month of June. To date she has raised over $2,000 to be donated to the CFIDS Association on behalf of the event. Next year I am hopeful she will be well enough to help us by developing a fundraising kit for patients to use for their own fundraising efforts in the months prior to the 2011 event. We are also considering offering the racers an option to secure their own donations per lap through an online source, as well as having more of a presence by the CFIDS Association at the event.
Event Awareness Campaign:
Early awareness efforts began with the development of an event website, complete with photos and descriptions of the event area, pages and links to provide updated logistical information to attendees, and registration information, with a link to the CFIDS Association and SolveCFS. All advertisements included some information about CFS.
Some efforts to create awareness were as subtle as making references to CFS symptoms, while announcing the Huffy Toss contest, or asking the eight or so CFS/fibromyalgia patients at the event to mingle with the racers as much as possible to capitalize on the opportunity to tell their personal stories, or to raise their hands during the awards ceremony. Other ways were more visible, like the signs hanging on the trees in the “dining and meeting area” which were created to display important CFS statistics. The race staging area sported an enormous tent on which hung the professionally made sign “SolveCFS Lounge.” Dark red chili ristras hung from the opening at one end, and chili lights were strung around inside. Below the chili lights, and in the center of the tent were pieces of very old, beat up furniture, a big screen TV, a public announcement/DJ station, a keg filled with beer provided by Santa Fe Brewing, a table with free Hammer Heed electrolyte replacement drink donated by Hammer Nutrition, and a volunteer table. Both Brian and I spoke about CFS at the mandatory race meeting during Friday night’s pasta dinner, and we used that opportunity to show the video “What Would You Do?” on the big screen TV.
Participants could compete in categories from solo up to corporate teams of 10. Winners were determined by completion of the most laps in 24 hours, and the top 3 winners in each category were awarded with a hand-etched mug created by Durango, CO artist Brad Goodell, as well as a SolveCFS awareness bracelet courtesy of Relax Pack out of Scottsdale, AZ. Technical information about the race was captured real time. Turquoise Timing utilized a Jaguar disposable chip system, which was embedded in the solo racer’s number, or on chili necklaces that the team members rotated to the racer who was on the course. As each racer completed a 16-mile single track dirt lap they rode past the timing tent and their number was electronically read. This information was sent via wireless router and was displayed on the big screen TV inside the SolveCFS Lounge so that as the racer rode through the tent they would see their team name, race number, and lap time on the monitor. Lisa Wishard became our announcer, and as the racers approached the tent she would read their number, cross reference it to a huge board hanging on a tree, and was able to announce who they were, what team they rode on, and in some cases what place they were in. She provided continuous and entertaining announcing for nearly the entire 24 hours. Sometimes the kids would help out.
Just outside the tent was orange mesh directing the racers back onto the course, and hanging from it were various sponsor banners. Throughout the staging area were other sponsor tents such as the High Desert Bicycles & Specialized tent which housed a bike tech, who provided any necessary repairs and sold store merchandise. A large food tent was brought in and Roadrunner Concessions sold fresh cooked food, cold beverages, and snacks all weekend long, There were large tables and chairs in the center of the staging area, and a large kid’s activities tent where they had supervised activities all weekend. They made Father’s Day cards, and other fun items, and later they enjoyed a kid’s bike race where every kid received a prize.
Other fun activities included a chili eating contest, and costume contest for which prizes were given away. There was an awards ceremony after the race, and throughout the awards we interjected messages about CFS.
The event was advertised in hundreds of bicycles shops in five states, as well as online. A press release was sent out to thousands of television, radio, and print media contacts in New Mexico, Arizona, Texas, Utah, and Colorado for television and printed media, as well as local, regional, and national cycling related magazines. The CFIDS Association of America helped by including it in the Link as well as on their website and Facebook page. Periodic email blasts were sent to various cycling groups; some shared the information through online forums, website, and blogs. The event was posted to most national cycling calendars, other regional event calendars. Printed posters and registration brochures with a short description about CFS and the CFIDS Association were distributed to bike shops in several states. Additionally we created a Twitter presence and an interactive Facebook page for all fans, including racers, spectators, and CFS/fibromyalgia patients. Two professional photographers and representatives from three magazines attended the event.
Organizing this event was exhausting yet empowering. I see so much potential in it as a template for other regional benefit events, and although it may seem impossible to do, I believe that with the help of healthy individuals it can be done. We are so satisfied with the outcome of the inaugural "24 Hours in the Enchanted Forest: A Race to SolveCFS" and a little bit blown away by the success for a first year event. Not only was this New Mexico’s first 24-hour mountain bike race, but this event was a huge milestone for CFS, as it was the first grassroots fundraising event in the 23 year history of the CFIDS Association. This illness has been ignored far too long, and for the four millions who suffer with CFS, and who have remained isolated, New Mexico just made a huge difference. Everyone received the CFS messages with sincere interest, and I am certain that a solid foundation for awareness has been established, which will only grow each year. According to our early calculations the event was able to raise well over $25,000 for SolveCFS. There are articles, and photos which are linked in the event website, as well as the event Facebook page. We anticipate doubling attendance for next year’s event, ideas are forming for ways to make it even bigger and better, and we hope you can be involved in some way.
Flickr Photo Album: http://www.flickr.com/photos/40482534@N00/sets/72157624339971204/
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