The Cancer Advocates Coalition is an off shoot of theLance Armstrong Foundation LIVESTRONG Summit in Austin, TX October 2006.
A group of us, delegates at the LIVESTRONG Summit, had the idea to create a regional summit to continue to build on the successes of the LIVESTRONG Summit and building a grass roots movement of cancer advocacy. We believe that by organizing and motivating individuals such as yourselves to do something in your local community, we can make significant differences towards making cancer survivorship a priority in this country!
We are survivors, caregivers, family and friends whom have also been affected by cancer in our lives. Some of us are long term survivors and some still in treatment and yet others having been deeply affected by watching our loved ones suffer from this horrible disease. Although our individual paths have arrived here from different perspectives, we share the goal and ideal of using our experiences for HELPING others to not only endure but to THRIVE!
Biographies on our committee..............
Ronald K. Bye, Chairperson.I am 52 years old... I was diagnosed with testicular cancer in August 1975 at 20 years old and married 11 months (still married to the same woman.. God Bless her for putting up with me for over 32 years!)... I had two surgeries and a year of chemotherapy... I was given a 50% chance of living 2 years and a less than 10% prognosis of 5 year survival.Fortunately I have been EXTREMELY healthy in the years since.. no recurrences and rarely sick at all.. not even colds... I remained silent about my cancer experiences for over 30 years.I was ashamed about my disease and all it’s implications.At the time of my illness, it simply was not something you talked about and I did not have the courage to change that.I have finally found my voice thanks to many amazing individuals such as Lance Armstrong , The Testicular Cancer Resource Center and many others.
I will be silent no more…………..
Ask and I will be happy to share my survival story with you.
I am deeply honored to serve on this committee with these amazing people!
Susan Santangelo, Co-Chairperson, is founder of the Breast Cancer SurvivalCenter (BCSC).The mission of BCSC is to provide post-treatment education and support services to breast cancer survivors and their families.BCSC has provided services to more than 2500 breast cancer survivors and family members since its founding in September 1999.
Prior to founding the Breast Cancer Survival Center, Susan served as Director of the Voluntary Action Center of Mid-Fairfield (VAC), a not-for-profit agency which promotes and recognizes volunteerism in Norwalk, Westport, Weston and Wilton, for seven years.
Susan was diagnosed with breast cancer in 1998 through a routine mammogram. After her treatment ended, she began to search for a program to provide information on issues such as post-treatment diet and exercise, as well as a wellness support group.Unable to find such a program in the Fairfield County area for herself, she began to network with other breast cancer survivors and discovered many survivors who also felt the need for a post-treatment program.She continued her research, and found model post-treatment programs in other parts of the country, but none in Connecticut.In August 1999, she left her paying position as VAC Director to found the Breast Cancer Survival Center.She serves as Executive Director of the program, a full-time position for which she takes no salary.The program, which is hosted by Norwalk Community College, was recognized by the IRS as a 501( c ) 3 not-for-profit organization.Among current program components are discussion/ support groups, a resource library, aspeaker series and special events on breast cancer issues,a quarterly newsletter, a buddy program for mammograms and doctors' appointments, and day and weekend retreats for survivors and family members. Susan has been honored by Business and Professional Women of Milford with its Woman of the Year Award, by the Girl Scouts of Housatonic Council with its 2000 Woman of Distinction Award,by the Connecticut Post as a Woman of Substance, and with the Local Hero Award by the Susan G. Komen Breast Cancer Foundation.OnOctober 28, 2000, she received the first Angel Award from the American Cancer Society for "showing exemplary contributions to cancer patients and their families and demonstrating undying compassion in the fight against cancer."In November 2000, she was recognized by the Norwalk Chamber of Commerce as an Athena Award Woman of Excellence, and as a Local Hero by the Westport-Weston Chapter of the American Red Cross. Cantact: ssantangelo@canceradvocatescoalition.org
Linda Bily, age 55, diagnosed breast cancer 1998. I had several surgeries and ultimately concluding with mastectomy, chemo and hormonal therapy. I've become a major advocate since then and already worked at an academic medical center. I went back to school (after 35 years) to get my master's in Patient Advocacy. While the hospital acknowledges all that I do (in my spare moments), I am pushing for a team of advocates in our soon-to-be-opened cancer center. My official job is the supervisor for Radiology and had been the supervisor in Respiratory Therapy before that. I do not have a clinical background, but as an informed patient and working in the healthcare environment for almost 20 years, I have a lot of knowledge about a hospital setting. I do community awareness programs, tons of fund-raising, patient safety initiatives, facilitate support groups, grant reviews, grant writing - you name it, I am not afraid to try it.I am involved with the Susan G. Komen Foundation, The American Cancer Society and Department of Defense as a consumer grant reviewer, Y-Me as a hotline counselor, and a Champion for Patient Safety through Patients for Patient Safety.
One of Linda's many involvements is theGift program at Stoney Brook University Hospital.
Charles D. Barnes (Dave) Age 63 – Retired in 2003 as Director of Systems Engineering at Telcordia Technologies (Formerly Bell Laboratories) after 39 years. I had an insurance physical at age 60. My PSA level was slightly elevated so I began a series of diagnostics that I had been putting off for several years. A T3 colo-rectal tumor was discovered as well as a positive biopsy for prostate cancer. After 4 surgeries, brachytherapy, 6 months of chemotherapy and radiation, I am healthy and active. I am a patient advisor in the colo-rectal service at MemorialSloanKetteringHospital in Manhattan. I also work with their patient services organization to help define and refine patient services. My motivation is based on personal experience. A cancer diagnosis is devastating to the patient and his loved ones. At this vulnerable time, there is an immediate need for critical information and I want to help all newly diagnosed patients and their families have access to the information they need, when they need it, to help them win their battle with this disease.
Linda Dziobek, I am in my 50’s and married for thirty years to my husband Joe who is a CEO of a mental health organization. We have two beautiful daughters, Amy 25 and Emily 18.They are my strength, support and on-going source of entertainment. Two days before Christmas in 2004, I was diagnosed with ovarian cancer Stage IIIc.I had surgery and chemo and did well until March of 2006 when my cancer recurred. I receive chemo monthly and doing well so far. Professionally, I am an RN and worked the last 17 years running a health care for the homeless program in Providence.It was professionally a life changing experience and demonstrated daily the importance of advocacy in health care.Currently I work as a health consultant/volunteer for the RI Health Center Association, a non-profit trade association representing the 11 community health centers in the state.My role as a consultant/volunteer is grant writing, assisting with trainings and special events. I am also active in the Oncology GYN program where I receive my care. Part of my personal action plan is to work with the oncologists/staff in the program to identify cancer disparities experienced by women receiving treatment. Recently I had the opportunity to participate in revising the state’s Cancer Control Plan as a member of the RI Partnership to Reduce Cancer, the state’s Cancer Coalition.
Sally J. Santi, age 40 from Eastern PA. I have been married for 13 years and have two boys; Rudolph "Sabastian" is 91/2 and Angelo is 5 years old. I am fortunate enough to work for a retail corporation that supports their employees participation in different volunteer & awareness opportunities. It was through their encouragement that I, as one person, CAN make a difference in the world. Nearly 12 1/2 years ago I lost my oldest brother Dennis, who was 37 at the time, to bladder cancer. His wife's insurance lapsed for several weeks due to her switching jobs. Unfortunately, all the bills submitted to the insurance company were denied. To this day I would like hold insurance companies more accountable than what they have been. Six months later my remaining siblings, grieving mother and other relatives when through the whole scenario again when my father gave up his battle to prostate cancer. My family, including myself, reacted with numbness and went about our everyday lives not knowing how to cope with this double loss. Through many wonderful organizations like the LAF, The Leukemia & Lymphoma Society (Team In Training and Light the Night), and Steps for Living, I've learned that it is not too late for me to now speak out and try to make a difference in my generation as well as the years ahead for my children and future generations. I recently became involved in the Steps for Living's Young Adult Leadership Council which states that it's "hip" to talk about cancer. WE NEED TO SPEAK OUT...TO MAKE A CHANGE!
Debra Violette. I live in Augusta, Maine. I was diagnosed with Stage III-A non-small cell lung cancer eight years ago. At that time, I was given a 10% chance of two year survival. While I was recovering, I realized that more must be down for the people of the State of Maine who are diagnosed with this disease. I found my journey a lonely one, mostly caused by the stigma that is attached to this disease and set out to look for ways to make life better for people diagnosed with the disease.I joined the Lung Cancer Alliance in 1999. Our mission is to advocate, support and educate the community about lung cancer. We advocate strongly for early detection through spiral ct scans. We know that early detection can have a more favorable outcome for this disease. The survival rate for lung cancer patients has not improved in 30 years. In Maine alone 1030 people will be diagnosed with this disease this year and 960 will die.In 2004, I joined the Dana-Farber Cancer Institute Lung SPORE. SPORE means special projects for research excellence. I am their internal advocate and have had the opportunity to travel the US to attend scientific workshops and conferences. I am a member of the American Association for Cancer Research (AACR). They have annual meetings in which scientists from around the world come together to share their findings. Last year I had the opportunity to be a mentor in their Survivorship program. I am also currently a patient advocate for Dartmouth Hitchcock Medical Oncology Board clinical trail. In addition to this I speak out about lung cancer and wrote a proclamation which the Governor of the State of Maine read in the Hall of Flags. You can visit www.maine.gov to read part of the event. I have written articles on lung cancer survival, as well as an essay that will be published in May 2007.
Matthew Zacharywas a 21-year old college senior and aspiring concert pianist and composer en route to film school to become a Hollywood film composer when he slowly lost use of his left hand, was diagnosed with pediatric brain cancer (medulloblastona) and told he'd likely never perform again. Eleven years, four albums and scores of concerts later, Matthew's struggle to get busy living has inspired countless thousands. Today, Matthew is an award-winning musician and composer, accredited thought-leader in public health, a leading authority on the youth cancer culture, a highly credentialed and coveted motivational speaker, and a burgeoning social entrepreneur with the 2004 launch of Steps For Living (now reorganized as I'm Too Young For This!), a nonprofit social enterprise benefiting young adults affected by cancer that sought to create lasting change in how the public relates to the disease. Matthew has 14 years of experience in advertising, marketing, information technology and visual communications for print and web. In addition to serving as an advisor on the prestiguous Google Health Advisory Council, his portfolio also includes expertise in visual communications for print/web, cause-branding, public relations, consumer healthcare, nonprofit management and social media. Matthew has won several industry awards and has been recognized internationally for his innovations as a visionary trend influencer and change agent who has always been ahead of his time. A native of Brooklyn, NY, Matthew holds an interdisciplinary BA from the State University of New York at Binghamton that combined the music, theater, computer science, and sociology disciplines. For more information about Matthew, visit his website, http://MatthewZachary.com/ Contact mzachary@canceradvocatescoalition.org
Beth Davis, I live in Duxbury Mass with husband Rick and teenagers Molly and Ian. I am a pharmaceutical sales rep for Pfizer Oncology Products. I am a Registered Dietitian and have worked at Dana Farber Cancer Institute in my early years. In 2005 I was diagnosed with a Stage II Breast Cancer which has encouraged me to continue working towards helping other cancer survivors.
Vanessa Underwood, CSCS, ACSM, AFAA Vanessa is a Fitness Consultant, Personal Trainer, Certified Strength Specialist, Cancer Exercise Specialist, Social Worker and Motivational Speaker. She is the owner of Underwood’s Sports & Fitness. As a personal trainer and certified strength specialist, she trains and educates people of all ages and fitness levels. She works with youth, teens, adults, college athletes and senior citizens. As a Strength coach she trains individual athletes, teams, and coaches. Whether you are an athlete looking to improve your strength and performance or an individual looking to change your lifestyle, Vanessa’s expertise and personal attention will bring you closer to your goal. In addition to her local business, she travels nationally and internationally implementing and presenting strength and fitness programs, at various medical facilities and Universities. Vanessa’s personal and professional knowledge is laced with 20 years of experience. Her devotion to exercise and fitness can be seen through various newspapers, and magazines (Reebok, Women’s Sports & Fitness, Lifetimes, Saturday Evening Post, Woman’s World) She has been featured on NESN, ESPN. And many radio shows. Her inspirational story was showcased and presented around the country. She was recently profiled in a book called “Lessons in Faith & Courage”. She is a competitor and a survivor She holds several national certifications with specialties in weight training, strength and conditioning, senior fitness, and nutrition. As a survivor of 2 kidney transplants, skin and anal cancer, Vanessa's hope is to provide emotional and physical support to other women dealing with female related cancers and the many issues that come with the territory. She became certified as a cancer exercise specialist. She is working with cancer patients to keep them strong during treatment & helping them recover and rehab back to their previous levels of fitness.
MaryBeth Frosco was diagnosed with breast cancer in 2002 at the age of 40. Following treatments and multiple surgeries, she stepped back into the world to resume her life, but soon realized that cancer had changed everything.In order to move forward, she knew she had to heal not only her body, but her spirit as well.It was on this road to recovery that MaryBeth found yoga and came to understand that she could engage in her own healing. She studied ashtanga and power yoga and eventually found Forrest Yoga®.MaryBeth’s belief that through yoga, we can awaken the power within ourselves to heal the body, mind and spirit meshed with the philosophy of Forrest Yoga® and she was hooked.She found the techniques of Forrest Yoga®so powerful that she was compelled to complete the Forrest Yoga® Foundation Teacher Training program with Ana Forrest so that she could share this gift of yoga with others.
MaryBeth uses the techniques of Forrest Yoga® and breath awareness to help individuals, especially those who have dealt with the trauma of cancer and cancer therapy, learn to bring life and sensation into all areas of the bodyShe believes if you are willing to sweat a little, you are going to feel a lot!! She teaches with compassion to let individuals explore and unleash the power within themselves to heal.
MaryBeth teaches yoga at Fresh Yoga in New Haven CT.She has a PhD in Microbiology and works at Bristol-Myers Squibb, where her efforts are directed toward the development of new agents to treat cancer.
Contact: mfrosco@canceradvocatescoalition.org
Marilyn Moore is the Executive Director and founder of the Witness Project of Connecticut, a community-based breast and cervical cancer education program for African American women.
Since 1996, Marilyn has dedicated her time, talent and energy serving women all over Connecticut in an effort to shape the attitudes of women about breast health and move them to participate in early detection screenings.A direct result of her work in breast health care is the growth of the program into an effective vessel to advocate for women who have been disenfranchised by the health care systems. Since 2002, the program has assisted over 700 uninsured women secure a mammogram and conducted over coordinated mammography screening for 1500 women.
Ms. Moore is President and CEO of the Witness Project of Connecticut.Ms. Moore is nationally known in the breast cancer arena and is a certified national trainer for the Witness Project. Since 1996 she has trained hundreds of women to be advocates for breast health and the uninsured throughout the United States and implemented a community based patient navigator program to assist uninsured and low income women access breast screening and follow up services.
