As a nonprofit organization, the Oral Cancer Foundation relies on the dedication and support of volunteers who selflessly donate their time, talent, and energy to help us achieve our mission of reducing the death rate from this disease through public awareness and early detection. This page will provide you with links to the OCF Regional Volunteers and related events in each of their geographic areas.
You may contact the foundation directly at this link –volunteer if you need additional information, would like to participate in OCF actively by becoming a registered OCF volunteer, or if you have a group that would like to co-sponsor an event with the Oral Cancer Foundation.
OCF conducts awareness and early detection events with dental schools, universities, hospitals and other health and patient related organizations. We also cooperate with a diverse group of private organizations that wish their club or group to be involved in contributing to charitable events. Groups as diverse as runners and cycling clubs, to scouting and church groups can participate to help raise awareness and the early detection of oral cancers. We welcome partners who share our values and desires, and who wish to make a difference in the world around them through active participation in charitable events with The Oral Cancer Foundation.
Volunteering brings rewards
Volunteerism—whether through online forum participation, through educating the public, or through fund-raising efforts—can be an emotional healing agent, distracting oral cancer survivors, patients and caregivers away from lurking depression, giving them a cause to focus on. Volunteerism is also a bridge-maker, drawing diverse community members together, spreading awareness and opening minds and hearts.
Volunteering definitely has been a benefit for me,” says survivor Barbara Boland of Philadelphia, Penn. “I have this other focus. I can say ‘Now I have a goal: I’m going to work on improving the five-year survival rate, help people to be diagnosed earlier.’ It helps me avoid the whole ‘Why me’ side, the depressive side.
Boland recently rallied her family members, co-workers, colleagues and friends to raise $15,000 to give toward a walk-a-thon staged in support of the Oral Cancer Foundation. The Walk for Awareness, produced by another survivor, cheer coach Minnie Ashworth of Chesapeake, VA, was held there in mid-April of this year. Ashworth, long steeped in the spirit of volunteerism, took on the challenge of producing the walk-a-thon not only to raise money, but to raise awareness about a disease that, despite its staggering toll, flies low under the public’s health-knowledge radar. The task was daunting: Ashworth had never produced a fund-raising event. But with help from her family, fellow survivors, and her doctors, Ashworth managed to stage not only the fund-raising walk, but an oral-cancer screening event as well.
I would guess there were 80 to 100 people in attendance with all of them getting oral screenings,” Ashworth says. “Daniel Karakla and Trad Wadsworth, my doctors, were there to do screenings along with Dr. Betsy Hagan, associate dean for clinics at the VCU School of Dentistry.
The doctors really extended themselves at the event, Ashworth says. “They already have my respect, but they gained it twofold when they did more than just screen for oral cancer. They could have come, put in a couple of hours, and gone home. But they didn’t do that. They walked miles, they talked to the other survivors and they made an impression on everyone who was there.”
Ashworth, who with her husband, Stacy, has 10 children, surmises the event made a lasting impression on participants who are too young right now to appreciate the impact. During breaks in the screenings, the doctors involved did oral examinations on the young children in attendance, a group that would not normally be candidates for an oral cancer screening. “When I saw children as young as 8 or 9 getting screened, it hit me that these children would forever be educated on oral health, meaning they stand a better chance of catching an oral cancer in the early, very curable stages,” Ashworth says. “Knowing that made me feel like we had made a difference, which was the goal of the day—to bring awareness others.”
Those who battle or have already fought oral cancer, as well as their caregivers, often find themselves in a similar crusade. Among them is Daniel Bogan of Kaukauna, Wisconsin, who took a four-week break from chemotherapy so he’d be strong enough to participate in the Walk for Awareness, is a devoted advice and support giver on the Oral Cancer Foundation’s web based Survivor/Patient Forum, a place where those who are newly diagnosed can candidly talk with individuals who have been down the treatment path before them.
We don’t offer medical advice, since we’re not doctors,” Bogan stresses. “But we can offer our experiences… many of the issues that come up with oral cancer can be emotional in nature, many can be related just to the desire to know that you are not alone in what you are experiencing. In these areas, survivors can play an important support role.
When oral cancer patients find the survivor/patient forum on the Oral Cancer Foundation’s web site, they often respond as though like they’ve found shelter from a maelstrom. “When I was first diagnosed with oral cancer, I’d never heard of it,” Bogan says. “Luckily, I stumbled upon the Oral Cancer Foundation online. I immediately joined—it was free—and two people called me right away, people in similar treatment, and they told me what was coming up. It was like somebody threw me a lifeline.”
Information and encouragement from fellow survivors and patients helps those newly diagnosed or undergoing treatment weather this most challenging period of their lives. Once they’re through treatment, many “graduate,” and themselves begin volunteering their time, effort, and emotions to others in need of encouragement.
“I get emotional when I talk about posting on the board,” says Bogan, who through advice seeking and giving has made friends from all over the world. “The reason is I don’t feel like I ever can give back what I’ve taken. I want to help the foundation as much as I can. My main goal is to … to help take pressure off Brian (Hill, the Foundation’s founder) and become an extension of his mission. Brian and OCF want to promote early detection, and I can be a proactive part of that process.”
Early detection is the grail of those who give their time to help spread awareness about oral cancer. Many tell stories of being turned away by doctors and dentists who pooh-poohed their patients’ concerns. They tell of having to badger a diagnosis out of the medical or dental systems. “I went to the dentist because I had a back tooth that was loose,” relates Ashworth. “He said ‘It’s gone bad. Let’s go ahead and take it out.’ He had an X-ray of my jaw. It was right there in his face. I look at the X-rays now, and it’s clearly visible that half my jaw had been consumed by a tumor. But I went undiagnosed for four more months and that’s a long time to have a cancer floating around in my body.”
Bogan’s story is similar: “I went to the doctor three times,” he says. “He blew me off like it was nothing. The third time I returned with complaints, they finally diagnosed me with Stage 4 cancer.”
Boland, a dental practice management consultant, previously worked as a dental hygienist, has an advantage over much of the general public: she knew about oral cancer. And she knew that when an abnormality cropped up in her mouth, it wasn’t something she should ignore just because she wasn’t a textbook case of a person at risk for the disease.
I got oral cancer without having any of the risk factors,” Boland says. “I never smoked, I was not more than a social drinker, and I was age 41 at the time of my diagnosis.” Boland was one of the lucky few who are diagnosed at Stage 1.
She credits her own persistence. But she, Bogan, and Ashworth, who all devote hours of time to the Foundation’s patient/survivor forum, all volunteer in the hope that in the future, Stage 1 diagnosis will be the norm, rather than the exception.
Besides participating on the Foundation’s interactive support board, Ashworth produced the Virginia Walk for Awareness.
“Organizing the walk was a learn-as-you-go process for me,” she says. “I haven’t done something of this magnitude before so I kind of felt my way along. Brian (Hill) provided a ton of sage advice, so I had his support the whole way.” Her large family, right down to her 5-year-old grandchild, pitched in to help. “My family made this event happen, not me alone,” Ashworth says. “From spending afternoons hanging posters, addressing close to 500 postcards to dentist offices, picking up tables and chairs, putting up with me on the phone more than usual, they helped me get it all in place.”
Bogan raised walk sponsorships, and then flew in from Wisconsin with his wife, Marcee to support Minnie’s OCF walk in Virginia. “ I met personally with all those who sponsored my walk effort, and who pledged a dollar amount per mile I walked. I told them why it was important to me,” he says. “And to the best of my knowledge, 100% sent their funds in.” He puts in the hours supporting fellow patients and the Foundation because it gives him a mission. “I feel real active about promoting the Web site and early detection,” he says. “If my efforts can save one person…”
The effort to save even one person from going through what they’ve experienced is what keeps these volunteers moving forward.
Boland takes advantage of the access to dentists her career gives her. On her own time, she speaks to groups of doctors and dentists about procedures they can adopt in their routine practice to improve the rate of early detection and increase the five-year survival rate for oral cancer. Her efforts have begun to pay off. “In past six months, among the dentists I’ve spoken with, and where we’ve implemented a formal early detection program, they’ve diagnosed two pre-cancerous lesions and one Stage 1 cancer.”
Those diagnoses made all her work worthwhile, Boland says. And her volunteer efforts have given her a surprising perspective on her own life’s path. “The fact that I work in dentistry and got oral cancer … it’s kind of like God said ‘OK, do something. Here’s your purpose in life.’ I just figured that was what the plan was somehow. I’m happy to have a way to use the cancer for a good thing. I never thought I would say that, never thought that my cancer could be turned into something positive, but it has. I can say that I definitely played a role in the fact that three other people are never going to have to have radiation therapy. I can say I played a role in that. I trained those dentists, and that feels good. … That feels really good.”
The foundation encourages others to become engaged in the effort to raise public awareness, and encourage the development of an annual oral cancer screening program in professional offices, such as dentists ENT’s, hygienists, and other medical professionals. Your contribution might be as simple as helping produce content for the web site, to write letters to people who may be in a position to help the foundation, to raise funds for the foundation’s efforts, or even put on a walk or screening event in your community. The possibilities are endless for those that have a passion to help others. And the ideas that have helped are very diverse. A father and son hike a long mountain trail for days to raise money in memory of a grandparent. A youth dance troupe puts on a recital event to raise funds for an awareness program. A motorcycle club rides to raise awareness. A group of professional musicians put on a concert to raise funds and public awareness. A bachelor auction in 2006 raises $7,000 to help OCF print awareness and information brochures. And these are only a few of the ideas that volunteers have come up with. You too could be part of making a positive change in the world. Contact the foundation. It will change your life, and that of others… perhaps even save a life.
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