Cycling for Sickle Cell Awareness
Latecomers to sporting events can call out, “What’z da count?” and some helpful spectator will respond with the current score of the game. Farron Dozier, SFC and Founder of What’z Da Count (WDC) wants to bring the whole country up to speed on the current score of the risks associated with Sickle Cell Trait (SCT) and high levels of creatine phosphokinase (CPK).
One in ten African Americans, along with some of Arabian, Asian, Caribbean, Indian, Mediterranean, and South and Central American ancestry, carry at least one copy of the gene that causes Sickle Cell Disease (SCD). Seventy-two thousand Americans carry two copies of the gene, resulting in SCD, which can lead to pain crises, infection, organ failure, and death.
While a single copy of the allele may not produce any noticeable effects, in some cases, SCT can cause similar symptoms to SCD. There is also a quarter century of evidence that SCT can cause sudden cardiac death in athletes or those engaging in strenuous activity.
Dozier, along with cyclist Demarco Pierre, want to raise awareness of Sickle Cell and ensure that carriers understand how to monitor their risk by tracking their CPK.
Cycling for Sickle Cell
Historically, SCD, which can affect children as young as five months, resulted in early death. Today’s health care can provide normal life expectancies.But, as Dozier learned, most carriers are unaware of their status, or its possible complications. “The conversation around Sickle Cell Trait for some reason has died off,” Dozier notices. “In my opinion mostly because their children who had the disease died so young and no one really understood the impact of that gene.”
Dozier himself learned firsthand, after a routine military exercise nearly led to his death. His CPK count at the time was over 10,000. Typical numbers are between 60 and 400.
Today, Dozier is healthy and tracks his CPK count, and, with the creation of WDC, has restarted the conversation, working to teach everyone how the trait is passed from parents to child, and what carriers can do to ensure that they, and their offspring, stay healthy.
Dozier had already been considering a cross-country motorcycle ride for the cause when Pierre of CityCrewCycling “showed up wanting to do a cycle ride from NYC to Pennsylvania.” Pierre’s young child carries the sickle cell trait, and the child’s mother has SCD. Eventually, Dozier and Pierre settled on a 123-mile, one-day ride from New Jersey to New York, scheduled for August 18, 2013, with events before and after the ride. To date, five team members have committed to the ride, and Pierre hopes that number will double before the actual event.
Putting the Fund in Fundraising
While CityCrewCycling is preparing for their big ride, they still need to raise money to purchase at least one bicycle, at a cost of $725, for the event. More cycles or funds to generate more publicity for the ride would also be welcome. Currently, they’re seeking sponsors large and small to underwrite some of their financial needs and already list Mary Tennant of Vollara as their first corporate sponsor.
WDC sells T-shirts and hats with their logo to increase their fundraising efforts, and are planning benefit concerts to raise money in advance of the event. To Dozier and the rest of his organization, the campaign is “more than a cause. It’s a war and,” he points out, “all wars…need to be funded.” Most important to the success of their efforts is that, “We need the cycle first so he can start training.” They’d also like to raise seed money for a series of free or by-donation benefit concerts. “As we plan this project,” he explains, “there will be various programs that people can choose to help fund the events.”
Symptoms of Success
WDC would like to see all at-risk individuals tested so that they know their trait status, and to that end, they’re also planning to purchase a mobile testing unit, “so when we travel the city or health events we can offer the community on the spot free screenings.” Providing genetic counseling as well as pain and health issue counseling is another goal. By asking questions like, “Are you having Sickle Sex?” and, “Do you know if your mate has the trait?” WDC is restarting the conversation about SCT and hoping that potential carriers can make better-informed decisions about their reproductive choices.
WDC is already “planning three major city events in Los Angeles, Atlanta, and downtown Philly,” in addition to the Awareness Concert in New York. They’re also working on staging comedy shows and jazz concerts, during which they’ll take a few moments to talk about the cause. Dozier envisions a series of “luncheons with speakers and doctors to share and answer specific questions,” that only experts can answer. He also sees the importance of “partnering with club promoters in LA and Las Vegas to allow us to speak to the people and share a few minutes about who we are and what we are up to in the world.”
Along with homepages, blogs, Twitter, Facebook, YouTube, email, and newsletters, Dozier has been hosting a blogtalk radio show for a few years. WDC DA MOVEMENT airs every Monday from 1 to 3 p.m. In additions to discussing his work on trait awareness, he discusses “various other topics like mental health and wellness, bullying, lupus awareness, and sports.”
Dozier is excited about the big event. On the 18th of August, 2013, after the ride and the main event in New York takes place, he’ll be able to see the fruits of his efforts. At the same time, he knows that “the smaller settings” are equally important, “because we get to be in the community where the disease hides out,” and, while “having fun and bringing the entertainment,” he’ll also be offering on the education he’s working so hard to share.
For Pierre, the anticipation around the big ride is rising. He and, “the CityCrewCycling team are looking forward to taking on the road,” and, just as importantly, are looking forward “to having the public’s support. The more people that show up for this event, the more attention we know we’ve brought to the cause.”