Fighting Breast Cancer with Complementary Modalities
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Ann Fonfa was the first person in her family to be diagnosed with breast cancer. Although the diagnosis came as a shock, even more shocking was the reality that she suffered from multiple chemical sensitivities that made her an unlikely candidate for chemotherapy treatment. Forced to entertain alternative treatment options, she found out about complementary modalities (CAM), which include yoga, meditation, acupuncture, natural nutrition, herbs, and many other natural forms of healing.
During her battle, Ann decided to start a study group in New York City within SHARE (Self-Help for Women with Breast or Ovarian Cancer), an organization she had been involved in during her personal fight with the disease. She invited speakers to talk to hundreds of women about CAM and recorded these talks to create a handout outlining key information from the study group to personally distribute at meetings like National Breast Cancer Coalition Annual Advocacy Training Conference, San Antonio Breast Cancer Symposium, and local breast cancer support groups around the country.
Inspired by her desire to “sow seeds of information and education,” Ann officially named her awareness program The Annie Appleseed Project in 1997, and continued to grow the program through creating a Web site, www.annieappleseedproject.org, in 1999, and officially obtaining nonprofit status in 2003. The site now receives between one and two million visitors per year and links to various cancer organizations and sites.
Ann has been endlessly devoted to her cause of raising awareness and volunteering her time to the development of The Annie Appleseed Project. In 2007, she spent much of her time (in between attending meetings around the country) writing a paper for publication, speaking with patients, and addressing patient groups, in fund-raising and planning a conference to help train cancer advocates about the evidence-base for complementary and alternative (CAM), natural and integrative therapies.
Ann’s devotion to raising awareness around breast cancer continues beyond her organization. She attends the National Breast Cancer Coalition Fund’s (NBCCF) annual advocacy training conference and serves as the Florida Field Coordinator, participates on Susan G. Komen for the Cure Lesbian, Gay, Bisexual, and Transgender (LGBT) National Advisory Council, is an active member of Consumers United for Evidence-based Healthcare (CUE), is the advocate on the Fox Chase Cancer Center’s Breast and Environmental Research Center grant from the National Institute for Environmental Health Science, and serves as Advocacy Chair for the Florida Breast Cancer Coalition Research Foundation and is on the Faith in Education Advisory Board, among others. In addition, she was invited to be the keynote speaker at an international meeting in India on World Cancer Day in February 2006. Ann presented a workshop on Adverse Events at the Cochrane Colloquium in Sao Paulo, Brazil in 2007.
Building a Center for Excellence for Breast Care
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When Barbara found out she had breast cancer in 1997, although frightened, she changed her mindset from “I’m going to die” to “It’s worth the fight.” She soon realized that, as an African American woman, she was up against frightening statistics of survival for her demographic.
Barbara, vice president of employee development programs at People’s United Bank in Bridgeport, Conn., decided to control her own health care. As a business woman, her project management and problems solving skills helped her create an action plan for healing: having fun, family discussions, conversations with friends and writing in her journal. She wrote throughout the process, both in the form of journal entries and prayers, and noticed how her concerns moved from herself to her family and into a more spiritual direction.
After winning her battle, it was clear to Barbara that she needed to share her experience and ensure more rapid diagnosis, counseling and education for women in her community. She formed the Norma F. Pfriem Breast Care Center (NPBCC), a community- and hospital-based multidisciplinary-service center, dedicated to providing all services for breast health, from education to treatment, to all women regardless of their ability to pay. The Center provides breast health and treatment information to women, and helps them to weave a network of support as they make decisions, enter treatment and recover. In the past eight years, the Center has served 15,000 women, more than 2,000 of whom were uninsured or financially impaired.
Because of Barbara’s commitment, the NPBCC became the first Community Center for Excellence for breast care at Bridgeport Hospital, and in the State; with the first nurse navigators program, guiding women through the chain of tests, procedures and counseling that make up the breast cancer journey; the first community genetic risk assessment program for women at high risk of breast cancer and now serves the most women in Fairfield County; and the first center offering multidisciplinary care, from education to screening to treatment.
Barbara has also been involved in other organizations, including the Breast Cancer Survivor Center and the Witness Project, which increases awareness about breast cancer among African American women. Every other year, Barbara hosts a magnificent Victorian Tea in her home and proceeds are donated to the NPBCC. She published her story with Sisters Journey, a support group for breast cancer survivors, and speaks at community organizations and churches and has shared her story on NBC's Today Show during National Breast Cancer Awareness Month in October, 2007. Outside of raising awareness for the cause, Barbara is an elected member of the Bridgeport Board of Education, a board member of the Bridgeport Public Education Fund, and a board member of the Community’s Bank in Bridgeport, Conn.
Teaching Others about Inflammatory Breast Cancer
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For the past five years, Barbara Harttraft has been through a true life altering experience, as she fights her diagnosis of Inflammatory Breast Cancer (IBC). Her experience has inspired her to become a full-time Advocate of IBC, striving to make other women more aware of the signs and symptoms.
Barbara underwent exhausting treatments in 2002, with hopes of beating the cancer, but has since continued the battle, as it has spread to her lungs, right hip, right rib cage, and recently her brain. Inspired by her vision of eradicating breast cancer for her teenage daughter, Barbara fights through rounds of chemotherapy each month while distributing IBC information, participating in fundraisers and raising awareness online. In her quest to raise awareness, she creatively uses FireBall candy, individually labeled with "The Fire of IBC," to show they're "fired-up" about beating IBC. More than 15,000 FireBalls have been distributed with an IBC Web site tag attached.
Barbara speaks publicly about her experience every chance she gets, including IBC presentations to "Lunch and Learn" meetings at churches, businesses and hospitals throughout New Jersey as well as events for the American Cancer Society and Komen 3-day Walk for Breast Cancer. Due to Barbara’s extensive Internet networking, she was asked to join the Task Force on Cancer Prevention, Early Detection and Treatment in the New Jersey Breast Cancer Workgroup, part of the State of New Jersey Department of Health and Senior Services.
Her various volunteer efforts are endless. Since early 2004, Barbara has been a telephone counselor to Cancer Hope Network, providing support to individuals seeking information about IBC. During the spring of 2005 and 2006, Barbara visited Rutgers University and the College of New Jersey to educate college students about IBC. Barbara has been a long-time participant in the Philadelphia Wellness Community IBC Support Group and was instrumental in the formation of the 1st New Jersey Wellness Community IBC Support Group.
Barbara’s fundraising activities include her participation in eight Race for the Cure events where she volunteers her time manning an IBC informational table with her husband, Greg. At each Race, the team distributes more than 1,500 brochures and more than 1,000 IBC-labeled FireBall candies. Further, Barbara’s race team, “Barb’s Bosom Buddies,” has raised nearly $10,000 in the past five years for Susan G. Komen for the Cure. Additionally, Barbara has participated in the past four Fashion Shows for the fundraiser of Robert Wood Johnson University Hospital of Hamilton.
Although Barbara’s personal battle with breast cancer continues, she remains dedicated to making sure other women find the support they need to help them survive. "I'm going to fight as hard as I can," she exclaims.
Ensuring Every Survivor is Empowered
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Carrie was diagnosed with breast cancer in February 2002 and did not just accept her diagnosis. Instead, she used the pains from her year of treatments to take control over her survivorship, channeling her energies into being a mentor and a source of support for others who have been diagnosed.
Carrie believes that being surrounded by other survivors and being able to share experiences is the key to a successful recovery. However, she also realized that there was no central database for survivors to search for retreats for their recoveries. Determined to change this, Carrie gathered existing retreat information, hired Web and graphic designers from her own pocket and worked tirelessly to launch SurvivorsRetreat.com. The site offers a comprehensive, searchable database of cancer survival retreats, filtered by theme, participants, location and cost.
SurvivorsRetreat.com is only one of Carrie’s many passions. While fighting her cancer diagnosis, knitting became a stress relief technique for Carrie. After beating cancer, she organized a knitting night for a local cancer support organization, providing donated yarn to create chemotherapy caps and prayer shawls. All completed work is donated to women undergoing chemotherapy in under-served communities.
Carrie is also extremely dedicated to the 2-Day and 3-Day breast cancer walks as well as raising awareness among her teenage daughter’s friends through an annual fundraising party in New York City. Last year, more than 250 people attended and each of them donated at least $25 towards the cause. With this money, Carrie graciously funded walkers who were having trouble achieving their fundraising minimum. Carrie’s knowledge has also landed her the position as peer reviewer of medical research grants for the Lance Armstrong Foundation, the Komen Foundation and the Department of Defense for the past several years. She has helped to identify promising protocols while working alongside oncologists and scientists. The honorarium Carrie receives has been donated to Susan G. Komen for the Cure, Avon Foundation and nonprofit cancer organizations such as Comedy Cures.
Carrie is a ray of hope, showing others how to take control over their diagnosis and demonstrate survivorship. She is evidence that the healing process starts from within, and involves getting out there and helping others. She has mobilized her family, her friends and anyone that comes to visit her site, to take control and to move beyond being victims of cancer.
Providing Quality Care to Cancer Patients
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Elizabeth Miniscalco had been an oncology nurse for 10 years, but that did not prepare her for the day she heard her own doctor tell her, “You have cancer.” Although it was a challenging time, Elizabeth saw the bright side: She could now more fully understand what her patients were going through.
Now, nearly 10 years later, Elizabeth continues to use her experience with cancer to benefit her patients at Swedish Covenant Hospital, saying, “There could not be a better bond.” She is often called upon to counsel and comfort her patients, but goes above and beyond in making each patient’s health and well being her top priority.
Her selfless dedication to her patients was the driving force behind Elizabeth's motivation to create a Cancer Treatment Center that offers a multi-disciplinary approach to fighting cancer. Patients may now experience the powerful benefits of massage therapy, energy therapy, healing touch or laughter yoga during their chemotherapy sessions to help add a bit of comfort and stress relief. Because of Elizabeth’s efforts, Swedish Covenant Hospital’s Cancer Program has earned the Community Hospital Comprehensive Cancer Program with Commendation from the American College of Surgeon’s Commission on Cancer, which is the highest rank possible for this type of program.
Aware of the fact that a significant number of cancer cases at Swedish Covenant Hospital are breast cancer cases, Elizabeth has spent countless hours of research and planning to create a Breast Health Center at the facility. The center is complete with a Breast Health Specialist who addresses patients’ medical, psychological and social needs and personally navigates them through treatment—an important aspect of cancer care that Elizabeth can personally attest to. Elizabeth is also responsible for initiating a partnership with Necessities Bag, a nonprofit organization with the mission of supporting mastectomy patients with a bag full of information and supplies to aid recovery.
Elizabeth’s compassionate concern for the well-being of each patient has made a significant difference in the Cancer Treatment Center at Swedish Covenant Hospital. Time after time, patients commend the quality of care provided by Elizabeth and often credit her for making a difference in their outlook of fighting their own personal battle with breast cancer.
Haley Crider first experienced the harsh reality of a breast cancer diagnosis when her mother, Mary Jo, was diagnosed nearly two decades ago. Haley, who was in college at the time, supported her mother through surgery and treatment, and breathed a sigh of relief when her mother passed the five, and then the 10-year mark cancer free. When the doctors told Haley’s mother that she would need to battle through a second diagnosis, Haley realized that even though she has no control over this disease, she could raise awareness and help save the lives of other women in her community.
Haley took action and initiated Paint the Town Pink, a mammography awareness campaign now in its seventh year. One of the campaign’s major community events is the Pink Ribbon Tie-On, held annually on National Mammography Day. The event features a live, onsite four-hour radio broadcast while volunteers raise awareness by giving away wearable pink ribbons, pink ribbon car magnets and key chains, t-shirts and important educational materials.
Through the years Paint the Town Pink has included special emphasis mammography days, collaborative efforts with local college sororities and a growing volunteer effort to raise awareness throughout Northwest Georgia. In 2007, Haley and her team of volunteers encouraged women with a new theme, The Power of Pink, an empowering message for women and their loved ones to take charge of their breast health. Volunteers sold 1,250 t-shirts with pink-ribbon tattoo designs and donated the proceeds to Cancer Navigators, a new cancer resource and advocacy group in Northwest Georgia.
As a public relations professional, Haley has channeled her enthusiasm and creativity into a campaign that has raised awareness and earned state and national recognition. “I am fortunate that I can combine a job I love, skills I’ve honed and a passion that I have. My mother survived her cancer because of early detection, and if I somehow contribute to saving just one life, then I have done my job. This is someone’s wife, sister or daughter. This could be a little boy’s mother. This is personal and professional, and it’s a message we have to get out to women everywhere.”
Using Experience to Help Others
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Breast cancer is a constant in Heather Cobb’s life. At the young age of two, and again in college, she watched her mother battle breast cancer. After losing her mother to the disease, Heather faced her own battle at age 28. Since that time, Heather has been a strong force as she raises awareness and fights for a cure, offering support and resources to young women diagnosed with breast cancer in the Tulsa, Oklahoma, area.
In addition to her role as a mother and wife, Heather is committed to making herself available any time for breast cancer patients. As the official contact person for the Tulsa Community Volunteer Group for the YSC, and the “go to girl” at her oncologist’s office for newly diagnosed patients in need of advice and support, Heather uses her infectious personality and positive attitude to encourage breast cancer survivors to fight. She continuously looks for opportunities to further her intellectual growth, regularly attending conferences, workshops and seminars.
Heather has played active roles in the Tulsa affiliates of the American Cancer Society, Y-ME National Breast Cancer Organization and Susan G. Komen for the Cure. Most recently, she was instrumental in setting up a Community Volunteer Group for the Young Survival Coalition in Tulsa, totally focused on educating young women through action, advocacy and awareness.
Additionally, Heather was selected to participate in the grant review process for both the Department of Defense’s Breast Cancer Research Program and Susan G. Komen for the Cure. Her selection is proof of her dedication to finding a cure for breast cancer, as well as her knowledge of the disease. Further raising awareness for the cause, Heather participates in media interviews, abandoning her fear of being in front of the camera or on the radio.
In true Champion form, she has taken a tremendous personal challenge, and has allowed herself to be transformed into an educator, advocate and spokesperson for the growing number of young women diagnosed with this disease.
Celebrating Life After Cancer
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Jennifer Johnson learned the importance of performing breast self-exams in 1992 as a volunteer spreading the message of breast cancer awareness and education with her college sorority, Zeta Tau Alpha. In 1999, at age 27, Jennifer found her own lump and was diagnosed with breast cancer while five months pregnant with her first child. The day following her last chemotherapy treatment, Jennifer delivered a healthy baby boy; and in 2003, Jennifer and her husband Matt welcomed yet another blessing, their daughter. She proved that life does continue after a breast cancer diagnosis and has committed herself to enjoying life and helping other women realize this possibility.
Jennifer is a co-author of the book, Nordie's at Noon, which shares the personal stories of four young professional women diagnosed with breast cancer at the age of 30 or younger. Once a month, Jennifer and her friends; Patti, Jana and Kim, met at Nordstrom's Cafe in Overland Park, Kansas, for lunch. It was their special place to laugh, cry, support, and educate each other and celebrate the journey of life after a cancer diagnosis.
Jennifer is also very active with nonprofit organizations and her college sorority, Zeta Tau Alpha. She travels the country speaking to college women, reminding them to be proactive about their health, and demonstrating that you are never too young to get breast cancer. Most recently, in July 2007, Jennifer shared her story with over 500 collegiate women at the Zeta Tau Alpha National Leadership Conference in Indianapolis, Indiana. Jennifer is active in P.E.O. (a women's philanthropic educational organization) and her church. She also volunteers for several breast cancer organizations, including the American Cancer Society's Reach to Recovery program, Susan G. Komen for the Cure, the Ribbons of Pink Foundation Fund, the Young Survival Coalition, and the Pregnant with Cancer Network.
Jennifer is dedicated to helping those stricken by cancer, fearing they face unbeatable odds, realize life after cancer is more than possible, it’s incredible.
TurningPoint Helps Thousands in Atlanta
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Jill Binkley, a two-time breast cancer survivor, was first diagnosed with breast cancer eight years ago. Inspired to survive by her three young children and husband, Jill underwent surgery, chemotherapy and radiation. These treatments left her with upper extremity limitations and pain, as well as lymphedema. As an experienced physical therapist, she utilized physical therapy and exercise to improve these conditions, and began to realize that she had much knowledge to share with fellow breast cancer survivors.
In 2003, she founded TurningPoint Women’s Healthcare, a nonprofit organization that specializes in rehabilitation services and wellness programs for women with breast cancer. As a major organization in Atlanta dedicated to breast cancer survivor issues, TurningPoint has reached thousands of women. Since its inception, TurningPoint has expanded its clinical services and survivorship support programs to two clinics in the metro-Atlanta area and has three additional outreach programs to increase access to services for rural and inner-city women. TurningPoint offers physical therapy, massage therapy, counseling, nutritional counseling and educational programs for women during and after their breast cancer journey. TurningPoint is staffed by a team of women who are passionate about and specialized in breast cancer. A large part of the mission of the organization is to educate the community and other healthcare providers about the side effects of breast cancer treatments and the importance of rehabilitation in helping women move from surviving to thriving after breast cancer.
Jill is proud to be a part of the TurningPoint staff and volunteers who have created a place where women can find physical, mental and emotional support regardless of their age, race or economic status, offering many educational programs free of charge and a financial assistance program for clinical services. In addition, TurningPoint offers breast cancer rehab training to physical and occupational therapists as well as information programs for nurses, radiologists, oncologists and surgery professionals. Jill further strives to grow the program; her intuition for the needs of fellow breast cancer survivors has led to the development of a Mothers with Young Children and Stage IV support group, as well as sponsorship of a breast cancer dragon boat paddling team, Dragon Boat Atlanta.
Through her ability to translate her own breast cancer battles into something positive that offers support to women across Atlanta, Jill exemplifies what it means to be a true advocate and leader in the fight against breast cancer.
Determined to Find a Cure for His Daughters
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Former Green Bay Packers safety LeRoy Butler has no problem wearing pink for the cause. His dedication to fighting breast cancer and raising awareness inspired the now retired football star to discover another side of himself, the charity businessman.
At a game in 1998, LeRoy noticed a fan wearing a pink ribbon on her jersey. He asked her the purpose of the ribbon and she explained that it stood for the fight against breast cancer, a disease that had taken her mother’s life. Having four daughters of his own, LeRoy realized the importance of this cause and promised the fan that when he retired, he would dedicate his time and energy to raising awareness.
LeRoy kept his word by starting The LeRoy Butler Foundation for Breast Cancer in 1998. He now spends the majority of his time raising money for individuals fighting breast cancer and their families. LeRoy and the foundation have raised more than $400,000, which has been used to fund research, provide financial assistance, assist with breast cancer treatment costs, and provide breast health education to women and men in the area.
LeRoy continues his fight each day, for both the fan that inspired him to make an impact, and for his daughters, who he hopes will never have to face the disease. LeRoy encourages others to help join in this worthy cause, and allowing us all to become teammates in the struggle.
Representing Community, Family and Hope
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Lillian Kehau Matsumoto remained dedicated to increasing breast cancer awareness and educating individuals about the importance of early detection through all three of her battles with breast cancer, first in 1994, and again in 1998 and 2002. Knowing that native Hawaiians experience a higher cancer burden, she declared it her personal mission to help other women in Hawaii win their battles with breast cancer.
Lillian’s mission drove her to become involved in local organization, Imi Hale (Native Hawaiian Cancer Network), and now serves on the organization’s Community Council. In this role, she is responsible for reviewing and ensuring the cultural appropriateness of processes and projects impacting native Hawaiian participants and communities involved in cancer programs and research projects statewide. As a City and County of Honolulu employee, Lillian is very much in touch with the community; she lovingly shares her experiences with patients and offers encouragement throughout diagnosis and treatment.
This includes talking with women in her church, promoting American Cancer Society's Friend-to-Friend Program at health fairs, and sitting one-on-one with women going through the breast cancer experience. As a member of the American Cancer Society's Relay for Life Planning Committee, Lillian was instrumental in starting an event for survivors who were unable to walk around the track, by encouraging these individuals to rock their way around the track in designated rocking chairs. Lillian also participated in a video created by Imi Hale through funding from Susan G. Komen for the Cure that was recently awarded a Certificate of Merit by the National Information Health Awards Program.
On a national level, Lillian has taken her story to Capitol Hill. In May 2007 Lillian was one of 200 advocates selected as a cancer survivorship delegate by the Lance Armstrong Foundation and provided an opportunity to raise awareness about the numerous unaddressed issues faced by people living with cancer before Congressional leaders. Lillian’s dialogue with Hawaii's Congressional leaders (Senators Daniel Inouye and Daniel Akaka and Representative Neil Abercrombie) resulted in their commitment and sponsorship of the National Cancer Act of 2007 that calls for a comprehensive Federal effort in early detection of, treatments for, and prevention of cancer.
Through Lillian’s strong relationship with God, her sons and her community, she has been able to make a difference in every life she touches. She continues her mission of saving lives, preserving a culture, and leaving a legacy of health and well-being.
What began as volunteer hours at the National Black Leadership Initiative on Cancer became a true passion for breast cancer survivor, Linda Johnson. After two years, Linda stepped forward to accept the position of Chairperson for NBLIC of Southern New Jersey, and has taken on raising awareness of the fight against breast cancer among her fellow African American neighbors like a true Champion.
In her new role, Linda has developed many new partnerships throughout the state to aid in her mission to eliminate breast cancer disparities in New Jersey. She has always believed that education is one of the key factors in helping African American women understand that breast cancer does not equal a death sentence. By demonstrating that adopting lifestyle changes can make a difference in health outcomes, she has led several pilot studies and initiatives within the African American community to bring attention to their needs.
In addition, Linda is also the Program Coordinator for the Center for Disease Control and Prevention’s Breast and Cervical Cancer Control Program (NJCEED), in Mercer County, where she continues to promote the need for screening and treatment services for breast cancer. Most recently, Linda drove the development of The Confident Woman Program along with the Simone Protective Cancer Institute, which provides breast health education and services to African American women in faith-based and community organizations in the Greater-Trenton Area, which includes clinical breast exams, education on breast self-exams and assistance with access to healthcare and patient navigation services. Many of these services are provided by fellow African American breast cancer survivors and volunteers from the community.
Understanding the strength of sharing personal experiences, Linda is also extremely open about her fight against breast cancer, as seen through her play “Where’s Shirley?” The play provides insight into her battle with the disease in hopes of spreading awareness among fellow African American women everywhere. She has also become a recognizable voice and champion for all women in the Greater-Trenton area as a talk show host on WIMG radio.
Providing Resources to Others
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After receiving the news that her doctor detected abnormal cells in her breast tissue, Linette decided against the doctor’s advice to wait for surgery and took direct action. After experiencing cancer’s devastating impact on her father- who died of stomach cancer, her husband- who died of leukemia, and her sister- who lost her battle with breast cancer only a few months earlier, Linette decided to immediately schedule prophylactic bilateral mastectomies. Results following her surgery showed that she did indeed have breast cancer. Since it could have taken up to five years for any symptoms to show, Linette’s choice to opt for preventative surgery saved her life.
After her recovery, Linette found herself at a personal and professional crossroad. After reaching great success as the founder of a medical publishing company in Kansas City, Missouri, she wondered if her 25 years of experience could be dedicated somehow to helping other women survive cancer, as she did. Strongly believing that information equals hope for individuals diagnosed with cancer, she embraced her vision for a comprehensive nationwide patient resource outlining the best treatments and facilities available for various types of cancer. With that goal in mind and with her amazing focus, Linette created Patient Resource: A Cancer Treatment and Facilities Guide for Patients and Their Families. To ensure that cancer patients and their families have access to the new guide, her company, Patient Resource Publishing, provides the guide to oncology offices and cancer facilities at no charge for distribution to patients.
"Cancer is a life-threatening disease which requires a completely different approach than a chronic illness," she has noted. "The treatment you choose in the beginning can determine your long term chance for a cure. I wanted to provide a cancer patient with every option available in making such critical decisions.” Linette also recently developed a Web site www.patientresource.net, allowing cancer patients from across the country to share their journeys with each other and reach out for strength and inspiration.
Today, Linette calls herself a breast cancer survivor in hopes that others will also fight back with the best weapon they’ve got- information.
Growing up, now well-respected artist Mary Ellen Scherl witnessed the ravaging affect of breast cancer and its often profound affect on self-esteem and body image. As the daughter of a 30-year breast cancer survivor, sister-in-law of a 15-year breast cancer survivor and friend to countless survivors, Mary Ellen asked herself, “What if my art could help fight breast cancer, not just depict it?”
Mary Ellen had always concentrated her art primarily on women’s issues relating to body image, self-esteem, self-confidence and self-acceptance. Having spent years creating art celebrating inner and outer beauty, challenging standard beauty conventions and exhibiting at shows benefiting cancer foundations, she realized she could do something much bigger to raise breast cancer awareness.
Determined to make a difference, Mary Ellen formed Mamorial, an art-based, breast cancer awareness, nonprofit organization with the objective of motivating breast cancer screenings. Mamorial is a traveling exhibition of art moldings that depict cancer-affected chests of both men and women. Her installation is a collection of life-casts in each stage of the fight against breast cancer, through which Mary Ellen hopes to make people confront the unseen reality of breast cancer and realize that we must find a cure.
As the mold is made over the survivor’s breast Mary Ellen’s art has become a healing process for many participants. There are approximately 80 casts currently displayed with more than 150 more casts currently in production. Each life-cast is an exact replica of the participants’ chest, including scars and lumps, and is hand-dyed to match the individual’s skin tone. Survivors from 23 states have participated and Mamorial continues to grow due to nationwide support. Mary Ellen hopes to expand Mamorial to other parts of the country, with hopes that it will become a powerful symbol for the fight against breast cancer, similar to the way the AIDS quilt has come to stand for support, love and tribute.
Mary Ellen believes that each Mamorial participant is an artist, shaping the world in which we live, creating awareness and understanding, and contributing to the healing of others.
Mary Olsen Kelly views the pearl as the metaphor for her life; a triumph over adversity. Having worked at the Black Pearl Gallery for years, she often contemplated the process of the formation of a pearl – created when an oyster, confronted by an “irritant,” applies thousands of layers of pearl material and actually transforms the intruder into something of great rarity and beauty: a pearl. Mary speaks to groups now, and writes books and articles urging others to “look for the pearl” in every difficult experience.
Mary was diagnosed with breast cancer on August 3, 2000; following her diagnosis, much like other breast cancer patients, she underwent two surgeries, eight rounds of chemotherapy and seven weeks of radiation. However, unlike other women in her position, Mary did not consider her experience a “fight,” rather a period of self discovery through which she was able to realize her true calling in life: to support other women and men through their breast cancer diagnosis.
To aid in her own recovery, she read every book available for breast cancer patients, attended countless support groups and conducted extensive research on breast cancer treatments and resources. Mary turned to writing as a form of therapy, believing that recording her experiences at the time would help her to successfully overcome challenges that lie ahead in her future. She soon realized that her writing expressed a great amount of truth and knowledge. Hoping that sharing her experiences with other women and men trying to overcome the disease would provide them strength and support, she compiled her notes into a “tools and tips” list that Mary began to pass along to individuals at support groups and speaking engagements.
Today, Mary is the author of three books dealing with breast cancer and healing, including: Path of the Pearl: Discover Your Treasures Within, #1 Best Tools and Tips from the Trenches of Breast Cancer and she is co-author, with Jack Canfield and Mark Victor Hansen, of the best-selling Chicken Soup for the Breast Cancer Survivor's Soul. Most recently, Mary collaborated with " Understanding Cancer," an ongoing series to involve, inspire, and inform about all things cancer. Mary hopes that individuals who are touched by her experience are inspired to transform the challenges in their own lives and to look for the pearls.
Access to Care for Everyone
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Nancy Davenport-Ennis’s battle with breast cancer began more than 17 years ago, when she was diagnosed in 1990 and again in 1991. In 1992, she battled the disease again, only this time through her dear friend, Cheryl. As Nancy watched her friend fight the disease as well as her insurance company, she understood that much work needed to be done to ensure that women with breast cancer receive the treatment they deserve. Nancy spearheaded the creation of breast cancer reform task forces that eventually lead to the passage of state legislation in Virginia, Tennessee and Missouri. After attending Cheryl’s funeral in December of 1994, Nancy decided to take her dedication to raising awareness to the next level and took the first step to what has become a lifetime of devotion to fighting to end the disease.
In 2005, Nancy and her husband Jack began drafting business plans to start the National Patient Advocate Foundation (NPAF) and Patient Advocate Foundation (PAF). The NPAF is a policy organization headquartered in Washington, D.C., that seeks to improve access to healthcare through regulatory and policy initiatives at the state and federal levels. The PAF is a direct patient services nonprofit organization which provides attorneys and case managers to assist with errors and approvals within private and public healthcare programs.
Because of her incredible commitment to breast cancer, Nancy has implemented numerous initiatives through NPAF and PAF that assist breast cancer patients along with their families. These initiatives include establishing national outreach programs for Hispanics/Latinos, African Americans and American Indians/Alaskan Natives, which provide education on the importance of early detection, lifestyle habits and various case management studies for breast cancer patients. Nancy also established the CoPay Relief program in 2004, which assists insured patients who are financially and medically qualified and are being treated for breast cancer. With the support of partners, Nancy was able to establish a Hurricane Relief to financially and emotionally assist 125 breast cancer patients displaced by Hurricane Katrina and Rita. Nancy has also forged a partnership with the CDC for Cancer Prevention and Survivorship and assisted in the establishment of the 2003 ABC initiative, which resolves billing issues for cancer patients.
For more than 17 years, Nancy has paid tribute to her dear friend Cheryl through her unwavering devotion to other men and women fighting breast cancer. She has never backed down, despite the obstacles, making her an absolute Champion for the cause.
Pink Ribbon License Plates Become Rolling Billboard for Breast Cancer Awareness in Indiana
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When Nancy Jaynes was first diagnosed with breast cancer in 1998, she was uncertain of what lay ahead. Displaying the courage and strength that she is respected for by family and friends, she fought through chemotherapy and radiation treatments. Once in remission, Nancy reflected on her incredible journey and the amazing personal growth she experienced through the fight against breast cancer. Thankful for the support she received, she was eager to show others that they could also fight breast cancer.
To help raise money to combat the disease, Nancy founded the Breast Cancer Awareness License Program, through which a portion of the profit from each license plate with a pink ribbon sold in Indiana ($25) is donated to the Indiana Breast Cancer Awareness Trust. The Trust has grown to be a large board of breast cancer supporters who volunteer many hours and support local organizations’ efforts to improve access to breast cancer education, screenings, diagnosis and treatment locally.
In January 2001, Nancy presented her idea to the Senate. At first it was rejected, but her perseverance helped land approval in spring 2001. Since its implementation, the Trust has received $700,000 and has awarded $445,000 to almost 25 nonprofit organizations in Indiana that provide support, screenings and educational materials to breast cancer patients. Benefiting organizations include, for example, La Porte Hospital Foundation, which offers free mammograms to uninsured women and men. In the past three years, the program has provided more than 150 mammograms to individuals who would not have been able to seek the screening otherwise.
Because of Nancy’s incredible dedication to raising awareness around breast cancer in Indiana and ensuring that all women and men, regardless of financial status and insurance coverage, are able to receive proper screening and treatment, she was asked to run the Olympic Torch in Fort Wayne, Indiana, a true indicator of the immense impact her project has had on her community. Nancy knows her perseverance has paid off when she thinks about each individual who has received free screenings, education and treatment from the funds raised through her program.
Neel Stallings is very passionate and vocal about fighting breast cancer. Her sister’s mastectomy in 1996 sparked her original involvement in launching the first Race for the Cure® in Charlotte, NC, and her own diagnosis in 1999, just six weeks after stepping up to co-chair the Race, strengthened her resolve not only to fight this disease but also to help other survivors. As a result, she works tirelessly and enthusiastically enlisting everyone she meets to join her in her quest for a world without breast cancer.
Neel uses her voice and compassion by “Shouting for the Cure” locally, nationally and internationally.
Locally, Neel helps other survivors by giving them support, resources and a listening ear. She started a support group at Wachovia in Charlotte where she keeps 68 known survivors linked together and informed, even after her recent retirement. Neel led Team Wachovia from 197 participants to consistently over 1,000 participants, winning the “Largest Corporate Team Award” all 11 years of the Race and making Team Wachovia is one of the largest teams in the country.
Neel also volunteers her time and expertise as a professional facilitator and trainer to train diverse speakers to go into the community and educate people about breast health. Together they have educated thousands of people.
Nationally, she volunteers her time to facilitate leadership development and team building courses at Susan G. Komen for the Cure to help Komen Affiliate volunteers from around the country be more effective leaders in their communities. In 2003, she was the Affiliate Representative to Komen’s national board of directors.
Most recently, Neel was honored to be selected as one of 25 delegates to represent the USA at Susan G. Komen for the Cure’s 2007 Ignite the Promise: Global Advocate Summit in Budapest, Hungary. She was further selected as one of four facilitators for a Summit session entitled, “Making the Case for an Early Detection Program,” which had representation from eight countries. Neel was described by one of the Komen leaders as “facilitator extraordinaire!”
Neel will not stop "shouting for a cure" until there is one. Her dedication and compassion make her a true Champion in the fight against breast cancer.
Courageously Broadcasts her Message
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"Here's the deal, no one wants to get a mammogram," says Neile Jones of Fayetteville, Ark. As the anchor for KNWA-TV, the NBC news station serving Northwest Arkansas, Neile jumped on the chance to use her job to raise awareness around the fight against breast cancer.
Neile’s outlook on breast cancer and life itself has been strongly shaped by her relationship with her grandmother, Klober. As a young girl, Neile could not fully understand Klober’s experience as a breast cancer patient and survivor, but as both aged and developed into close friends, Neile began to realize what a life-changing experience it had been and felt indebted to those who had helped save Klober’s life.
In hopes of helping other women conquer their own fears toward getting mammograms, Neile volunteered to allow cameras to follow her through her experience of having her first. Neile’s commitment to her community and to eradicating breast cancer continued from there through the creation of Project 11- Side by Side, Saving Lives, Raising Awareness. Through Project 11, Neile encourages community members to register for the program that reminds them each month to follow through with their monthly breast self-exams. This special monthly project encourages each member to talk openly about breast health with friends and family, and raises awareness of the risks of developing breast cancer and options for treatment.
On the 11th of every month, KNWA takes raising awareness to the next level, through turning the television station into a breast cancer awareness vehicle. On this day, Neile includes special stories about local women fighting breast cancer and offers ways to support the cause. Project 11 also includes a "thoughts and prayers" blog, a community blog for which Neile regularly posts entries and lists local resources and information about breast health.
Neile’s fight against breast cancer extends to the community outside of her work. She closely collaborates with the Ozark Affiliate of the Susan G. Komen for the Cure, serves on their Media Committee and is an honorary member of the board for Help Oncology Patients Excel (H.O.P.E.). In 2005, Neile spearheaded "Team Neile" and raised more than $10,000 for the fight against breast cancer. She was also awarded the 2005 Cameo Award for her breast cancer awareness volunteerism efforts.
Neile’s genuine compassion for her community is instantly obvious as is her kindness for everyone she meets. She believes she is an ordinary person using whatever platform she can to make an extraordinary difference, and is determined to reach as many community members possible through Project 11 and related breast cancer awareness efforts.
Raising Awareness by Raising Livestock
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In 2005, Palmer McInnis’ stepmother, Carla, lost her battle against breast cancer. Stricken by grief and yearning for a way to honor Carla’s memory, Palmer considered his own life and what opportunities he could take on to raise awareness.
Palmer had been raising a heifer at the time for the Pasadena Livestock Show and Rodeo and recognized the auction as an ideal opportunity to honor Carla. He announced his intention for all proceeds from his heifer to be donated to The Rose, a nonprofit, community-based medical center offering breast cancer screening diagnosis and treatment that had diagnosed Carla and consistently supported her throughout her treatment. Palmer’s heifer was voted Grand Champion in Breed and he was able to donate the $11,000 prize earnings to The Rose that year.
Recognizing the success from the year prior, Palmer decided to do the same fundraising scheme with his new goat Poncho, for the following year’s auction. Palmer painted Poncho pink and tied pink ribbons around its neck to further cement his efforts to raise awareness, and to ensure that all bidders understood that proceeds would be donated to The Rose. Unknown to Palmer, local companies had decided prior to the auction that they would help him raise money for such an important cause, bidding on the eighth-place goat until the funds raised reached $115,000. This was a truly historical moment not only for the rodeo, but also for The Rose and Palmer himself.
The Pink Goat Society is The Rose's tribute to Palmer McInnis, which allowed for the start of an endowment fund and a special society of corporate and individual donors. With Palmer's gift last year, The Rose was able to provide 18,000 mammograms and 35,512 medical services, with more than 10,000 of these services at no cost to uninsured women.
Palmer’s story is one of love and selflessness. Many 18-year-old young men compete in the Pasadena Livestock Show and Rodeo, hoping to earn money for college, but Palmer selflessly dedicated all funds raised to The Rose in honor of Carla, proving himself mature beyond his years and dedicated to a truly important cause.
Translating Cancer into Something Beatable
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The moment the doctor said the word, "cancer” to Pat Lauzze in July 2000, she translated that diagnosis into a vision: “surviving.” She delved into cancer resources in the Finger Lakes region of New York and was astonished to find few available. Pat gained the strength to defeat her breast cancer diagnosis and decided to dedicate her time to making sure no other woman was left asking, “Now What?” following a breast cancer diagnosis.
In the summer of 2006, Pat approached the Wellness Council of the Southern Tier, a cancer education and screening program, to propose the creation of an educational series about cancer geared toward cancer patients as well as their families and the community at large. With funding from the Wellness Council and support from the American Cancer Society, Pat was able to make this dream a reality. "Coping with Cancer" is now in its fourth season and has been a great success, attracting partners from the American Cancer Society and the National Cancer Institute, and covering important topics such as, nutrition for the cancer patient, end of life care, legal services and clinical trial information.
Pat, dedicated to furthering the fight against breast cancer, most recently established the Steuben County Cancer Task Force. This group joins various cancer organizations and resource agencies across the Western part of New York State, including the Wellness Council, with the goal of providing the community comprehensive cancer information and resources. One of the crucial services provided by the Task Force includes distributing cancer patient resource information to primary care providers and practitioners, to ensure that patients understand their healthcare options.
Pat is highly respected and admired by those around her. The Wellness Council calls her, “a source of strength and hope for others and a true Champion and friend.” Her insight, talent and compassion have led many cancer patients to contact her, and to feel less alone as they struggle with medical terms, treatment options and survivorship issues as a result.
Peggie Sherry, two time breast cancer survivor and founder of Faces of Courage, has lived life with a true passion for helping others and embracing the unknown. Following her own breast cancer battle in 2003, Peggie founded Faces of Courage, a nonprofit organization dedicated to providing life-enriching experiences for children and families impacted by cancer, with hopes to ensure that women and men facing life threatening diseases received education, encouragement and support.
Peggie utilized her background in the bank industry and as a television producer to create and manage Faces of Courage. She currently serves as Founder and Executive Director of the foundation, which provides free workshops, outings and overnight camps structured to foster encouragement and empowerment within attendees; and specifically runs the Faces of Courage overnight Women’s Cancer Retreats and camps for children.
Outside of her foundation work, Peggie created the Polka Dot Tour, a more than 1,800 mile road trip traveled by motorcycles, RVs, and cars bringing survivors, sponsors and supporters across Florida. The outreach program works to promote courage, strength, endurance, comradeship, and attitude in an effort to raise awareness around the fight against breast cancer.
Peggie is also working with a professional team of highly recognized doctors on the creation of Cancer Answers 101. An education program (similar to Lamaze) consisting of 12 one hour videos that will include information from leaders in the cancer field, touching on topics such as dealing with insurance companies, how to tell family, friends, and co-workers about a diagnosis and ways to stand up for health benefits, patient responsibilities, treatment options and side effects.
Peggie strives to be a source of courage to those around her, and finds inspiration in those she helps each day.
Creating a Voice for Young Survivors
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At the young age of 27, Roberta faced the challenge of her life when her doctor told her that she had an early stage, but aggressive form of breast cancer. Roberta’s life was turned upside down as she underwent chemotherapy treatments and a mastectomy. Determined to not let the disease push her down, Roberta set out to learn everything she could about the disease.
She soon realized that information for young women with breast cancer was scarce and was even more surprised to realize that many of her doctors and nurses were uncomfortable treating such a young patient. Roberta understood that there was something she could do to change this. She and two other breast cancer survivors, both under the age of 35, joined forces and organized the Young Survival Coalition in 1998, an organization dedicated to improving the quality and quantity of life for those under 40 with breast cancer. The organization has met continued success over the past nine years, as Roberta, Joy and Lanita have reached 23,000 members through their Web site (receives 80,000 site visits per month), bulletin boards (receives close to 38,000 hits per month) and annual conference with educational materials and information.
Embracing the motto, "Action, Advocacy, Awareness," Young Survival Coalition members provide education and support to young survivors and their caregivers at nationwide meetings, teleconferences, through DVDs and on the web. In addition, members attend conferences as advocates, educate federal and state legislators, speak at universities, colleges and health fairs and put on an annual awareness campaign targeted at the medical community. Roberta hopes the work of the organization will encourage doctors and scientists to delve deeper into finding out why some women face the disease so early in life.
Roberta also volunteers for Susan G. Komen for the Cure. As the chair of the New York City Race for the Cure in 2001, she helped to raised $1.7 million for the organization. For her volunteer work, Susan G. Komen for the Cure awarded her the 2003 Jill Ireland Award for Volunteerism and she was named “Woman of Courage” in 2007 by the Houston Hadassah.
In addition to her efforts to fight breast cancer, Roberta is senior vice president at The Methodist Hospital in Houston, Texas, where she helps thousands of people each year. Her passion and dedication are admired by all who know her, especially her husband whom she met during chemotherapy, and her three children.
Coins of Commitment and Compassion to the Cause
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After his wife was diagnosed with breast cancer, Sean Gladieux wanted to do something for his soul mate, Jill, to show her that he would never leave her side and that together they could beat her diagnosis. Both law enforcement officers for the Greensboro, North Carolina Police Department, Sean and Jill have had more than 25 years combined experience in a field of honor and integrity.
Sean wanted to embody the strength and courage that his wife and every other breast cancer victim and survivor showed every day in their fight. He decided to design coins for breast cancer victims to show his support for the cause and raise money for breast cancer research. Sean partnered with a local foundation, Friends for an Earlier Breast Cancer Test, in Greensboro, North Carolina, to sell the coins online and at local events. He took his mission on tour, telling his and Jill's story, "soul mates," from Georgia to Michigan and selling the cancer survivor coins in more than a dozen states and as far away as the Turks and Caicos Islands.
Since the creation of the coins, Sean has partnered with branches of Curves for distribution, has authored a special section of the Regional Cancer Center's Journal and Resource Guide for women with breast cancer and has participated in multiple interviews with local television stations promoting the importance of self breast exams, the need to find a biological test for breast cancer, and how to support family and friends affected by breast cancer. To date approximately 700 coins have been sold and $7,000 raised for Friends for an Earlier Breast Cancer Test.
Despite Sean’s dedication to promoting the coins and raising awareness, he has remained by Jill’s side as she has undergone numerous operations, including her first lumpectomy and four chemotherapy treatments. The couple gains strength and courage from one another, and continues to fight for their love.
Sean’s coins have done more than raise awareness and money; he has spread hope, showed tremendous compassion and enduring commitment to the fight against breast cancer and to Jill.
Slamming the Fear out of Mammograms
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Sharon Marler, a 25-year breast cancer survivor, feeling a need to assist other women fighting the disease, embraced her own experience and recognized that she had an immense amount of knowledge to share with others. Sharon put her thoughts on paper, and wrote a book titled, MammySlammy: Mammograms with Courage and Humor.
The book addresses the reasons why Sharon and her friends hold mammogram parties. Sharon realized there were others who, like her, may once again be told the cancer was back. She, and her friends, decided to erase all the excuses and avoidance by turning the annual ‘glamour shot’ into a celebration of life. It provides an innovative way to make mammography fun and stress-free as women wisely join together to ensure their good health and quality of life, by celebrating each appointment with friends, chocolate, gifts and balloons. The success of the parties, and the encouragement from her husband, daughters, and friends led her to write, MammySlammy: Mammograms with Courage and Humor. The book has won both state and national awards declaring it an inspiration to all.
After recognizing the book’s success in reaching women, Sharon decided to take a more active approach in the fight against breast cancer and other health issues. She founded the Women's Health Awareness Team (WHAT), with the goal of raising money not only to provide mammograms for those without insurance or financial means, but also to lessen the financial burden for those who need assistance to and from treatment. WHAT hosts a health fair focused on prevention and early detection by providing female attendees reduced-fee mammogram screenings and The Pink Tea, an event that allows women to share information and stories, celebrate those who have survived breast cancer and remember those who have lost the battle.
Sharon frequently serves as a keynote speaker at various cancer, and non-cancer events. She teaches seminars and workshops, and uses her positive attitude, knowledge base, and delightful sense of humor to motivate others to overcome trials and achieve greatness. These characteristics aided her in bringing the first Relay for Life Event to Anthony, Idaho, and managing the event for the first two years. This year Relay for Life will be held in Rexburg, a neighboring community, with Sharon’s successor leading the event. Sharon will continue her work with the Women’s Health Awareness Team’s annual health fair, and the Pink Tea.
Sharon Marler is dedicated to helping Idaho fight breast cancer; her energy and creativity involve the entire community in raising awareness and spreading education.
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