The Ovarian Cancer National Alliance changed my understanding of life as a survivor of ovarian cancer. First, as a client, I learned about my disease through their education programs. Then I learned about empowerment, testifying on behalf of other women with the disease. Through their outreach efforts, we engaged the underserved and under-informed. We became the voice of patients to healthcare providers and policy makers, and made substantive change. This is a charity that affects every aspect of ovarian cancer - patients, clinicians, researchers, donors, caregivers, lawmakers and the public. Serving on their board is the most honorable role of my life.
I was diagnosed with Stage 3 C ovearian cancer in May 2010 and didn't know a thing about this disease. After I was discharged from the hospital I went looking for a website that would answer my questions. I came upon the Ovarian Cancer National Alliance and learned so much. My family and myself learned what to expect. Since that time I have gone back to this website to learn different things and have help in their fund raising in the months of September. I will do anything to help OCNA to raise awareness of Ovarian Cancer so the next woman doesn't have to go through what I did. Thank you OCNA, you have helped me more than you know.
A friends of mine was diagnosed in June 2014 and in July I shaved my head in an act of love and solidarity. I decided to start a fundraiser and I contacted OCNA. I spoke with Catie and she told me how to get the ball rolling. I lost my friend August 16th and have continued on my mission. Catie and her team were always there to not only console me when I was feeling down, but they all lent their ideas and creativity when I hit a tough spot.
I am proud to say I support the Ovarian Cancer National Alliance and I am hoping to make this a YEARLY EVENT!!!
OCNA has changed my life. I was diagnosed in Dec, 2011, with Ovarian Cancer Stage 3C at age 59. I am now 62. I learned of OCNA thru their partner member NormaLeah Ovarian Cancer Foundation's director and founder, Jodie Kavensky, at a fundraiser for The University of Iowa Ovarian Cancer Research Lab.
Jodie encouraged me to visit the OCNA website. I joined OCNA's Survivors Teaching Students program and started the program here in Iowa in February, 2014. We have presented this program to 168 students at The University of Iowa College of Medicine and College of Nursing, and at Southeastern Community College in Keokuk, IA. In July, I attended OCNA's National Conference in Washington, DC. That event itself was lifechanging. There I met hundreds of survivors who have been fighting this disease 15-20 years. When I was diagnosed, I thought I would die within 1 year. As I sat in one of the presentations next to another survivor, the researcher spoke of the current findings and new treatments on the horizon - the lady next to me turned to me and we both had tears in our eyes, and we said we are NOT going to die, we are going to LIVE! OCNA provided me with a scholarship to attend their National Conference. Without the scholarship, I could not afford to attend. OCNA has given me HOPE. OCNA has provided me with programs to educate future healthcare providers so women will be diagnosed early and LIVE.
As a survivor I have been involved with OCNA since the founding 17 years ago. What has been particularly impressive is to see how the leadership and experienced staff of the organization has been a convenor of advocates and the medical professionals to bring about public policy changes and to encourage expansion of research funding.
As an oncology nurse and a leader of one of the Partner Member groups, I have been involved with OCNA for the last 14 years. It has been an incredible partnership with the main goal of improving the lives of women with ovarian cancer. As a healthcare professional, it is the place I turn to when I need resources for my patients. I have had the privilege to serve on the board of directors for the last 6 years. It is an honor to work on the OCNA team.
Nine years ago, I turned to the Ovarian Cancer National Alliance after losing a dear friend to ovarian cancer. I was interested in building an organization in my community to adavocate for ovarian cancer. The Ovarian Cancer National Alliance assisted me tremendously with this process. They have guided and supported my organization all along the way. It is a true privledge to work with the Alliance.
Teaming up with the Ovarian Cancer National Alliance has truly been life changing. My mom's battle began in 1998, but because she was BRCA negative, I was told that I was only at slightly increased risk. In an effort to be proactive, I began seeing my mom's gynecological oncologist for my yearly check-ups and did so for more than 10 years, yet somehow ovarian cancer came to visit anyway. After my diagnosis, one of the very first resources I found online was OCNA's wonderful website called Inspire. That led me to an amazing group of women who are also battling my rare type of OVCA, so rare that it has no standard treatment protocol.
Last year I accepted a role with OCNA as an advocate leader in order to spread awareness of this deadly disease in my state and community. I attended their national convention and visited Capitol Hill to advocate for increased funding for awareness and research. The sense of empowerment that OCNA gives survivors is the best medicine there is.
When diagnosed with late-stage ovarian cancer in 1999 I knew very little about ovarian cancer, other than it was often lethal. Working with the Ovarian Cancer National Alliance (OCNA) we were able to achieve Medicare coverage of PET scans and I found an entire "village" of women who are not only surviving but thriving! This organization hosts and monitors the Inspire website for patients and caregivers who are interested in others' experiences and a national conference for survivors featuring top ovarian cancer researchers.
OCNA's "Survivors Teaching Students - Saving Women's Lives(R) program where survivors share their experience from symptoms, diagnosis, treatment and their present status with medical students is lifesaving for their future patients. As one student commented, "we will never forget your faces and stories, you are heroines to us."
OCNA has a powerful grassroots impact via Partner Members across our great Nation. I trust OCNA by donating, as a survivor, my time and energies toward disease awareness on the local and at the national level as a volunteer research patient advocate representing patients and OCNA.
I found my voice as a survivor advocate when I attended my first Ovarian Cancer National Alliance conference and lobby day in 2006. The information presented by leaders in ovarian cancer research gave me so much hope and I was overwhelmed with joy to see so many survivors, family members, friends and Partner Members from all over the country. I had just completed treatment for first recurrence and was empowered to learn more and take action. The passion, energy and dedication of the board and staff to connect survivors with helpful information and opportunities to give and back, and work with medical and professional organizations on current issues is inspiring. The Alliance has been a powerful force behind many meaningful improvements for women with ovarian cancer and their families.
It has now been 17 years since my diagnosis with advanced ovarian cancer. Fortunately for me, that was also the year that the Ovarian Cancer National Alliance was founded. Through every twist and turn of this journey, the Alliance has been with me. I count on the Alliance for accurate and up-to-date information about the disease. The organization has afforded me a place to use my voice for all women diagnosed with ovarian cancer. Each year as I attend their National Conference, I see the far reaching effects of the Alliance, turning survivors into thrivers. In the past two years I have watched in awe as the Alliance has worked to bring groups together to advance our cause and research. I am proud to be associated with this organization which represents our community so well.
As a survivor I have had a great deal of interaction with OCNA over the last 15 years and can only say that it is by far one of the most outstanding nonprofits I have encountered. A wealth of information about the disease, resources for the patient and family, concern and assistance with the challenges many of us face not only physically and financially but also emotionally. OCNA is passionate about awareness of ovarian cancer for all women, physicians and future health professionals and has an amazing staff and cadre of volunteers to accomplish this mission. The staff's enthusiasm is infectious and motivating. If you don't believe it, try saying no to attending the annual march to Capitol Hill! The staff is small in number but extremely commited to their jobs. If they do not have an answer to your question, they will work hard to get the right information to you. I know how hard the board works to make sure donations are used in a manner that will have the most impact for survivors and all women at risk of developing ovarian cancer. Proud to give my dollars to this major force on the TEAL TEAM.
After my diagnosis of ovarian cancer in 2002, I truly thought my life was over. It was then that I attended my first Ovarian Cancer National Alliance Conference in Washington DC. It changed my life! I was introduced to amazing survivors, top notch doctors and researchers, and an incredibly dedicated and competent staff. That was the beginning of my learning how to become an advocate for ovarian cancer. I currently serve as President of the OCNA Board of Directors, and I could not be prouder of our fine organization. The staff and the board work tirelessly to serve the best interests of the ovarian cancer community.
Diane Rader O'Connor
Seven years ago,the Ovarian Cancer National Alliance made it possible for me to transcend the label of "cancer patient" and become an advocate; it changed my life. I just attended my 8th annual OCNA conference---they keep getting better and better. OCNA is a leader in education, awareness, and advocacy in the area of ovarian cancer. I am proud to be a board member and the president of my local Ovarian Cancer Alliance of OR/SW Wa.
Ocna's customer service is horrible. If you call, there's rarely anyone to answer other than interns, who don't know enough to answer the questions. It also takes a long time to receive a gift acknowledgement. Ocna obviously funds the salaries of the higher level staff, and seems to hire all interns as staff....so I wonder how my donations are being used.
Review from CharityNavigator
I wish they would state the percentage of our donation funds goes directly to the cause. I hate giving to charities because of adminstrators and advertisors take too much money.
I did the Washinton circles with these people and they are really good at getting the word out. They got us funded again this year with a lot of hard work and pressure on the political arm. Great job, guys. Keep on keeping on.
Review from CharityNavigator
This is an amazing organization that truly touches the lives of so many women. What I love most about this organization is the dedication of the staff and board members. They do work around the clock are are fully committed to the cause. All of the events I have attended have been incredibly well run and carry a spirit of hope and great optimism.
For ovarian cancer survivors OCNA is a godsend - advocating for us in Washington, D.C., gathering us together for an inspiring, informative, and encouraging annual conference, and helping its partner members to educate women and advocate for better awareness of ovarian cancer and its symptoms. OCNA is an excellent example of a nonprofit - great organization, great results, and great people!!
The Ovarian Cancer National Alliance is a fantastic organization with strong and passionate advocates who support those who are touched by,as well as spread awareness of, this terrible disease - ovarian cancer. I feel truly honored to work with them every year during the annual Conference, and every year I am more impressed by their dedication.
I continue to volunteer at OCNA events in Washington DC as well as help the OCNA's Government Affairs team by passing on Congressional intelligence to help them as they follow issues in Congress which will benefit Ovarian cancer survivors and fight this awful disease. Having my wife and brother-in-law lose their mother over 10 years ago to Ovarian cancer and this has ignited a fire in me to help such a great organization doing such great things (the OCNA) anyway I can.
The organization is an excellent group of advocates for those affected by ovarian cancer and their families and friends. They support a proactive, non victim role for women in championing their own health.
This is a great organization that has a lot of heart. I've enjoyed volunteering at their events because they do a great job of fundraising while publicizing their efforts to educate people about ovarian cancer.
OCNA does mission critical work with passion and compassion. They are leanly staffed and resourced, yet operate in a strategic and impactful manner.
I'm a survivor of ovarian cancer and, after evaluating other cancer charities and serving on other boards, decided this group will make a difference. OCNA has earned respect on Capitol Hill, among scientists and survivors. Excellent leadership and very beneficial programs.
The Ovarian Cancer National Alliance has united individuals, groups and healthcare professionals in the fight against ovarian cancer. They are working on behalf of patients and families to ensure our voices are heard in Washington and government funding for ovarian cancer is maintained and increased. The Ovarian Cancer National Alliance is the "go to" resource for ovarian cancer and I am proud to be a part of it!
I have been very impressed with all aspects of OCNA and feel that not only does it do fine work but is very well managed. Unlike many non-profits, whose top professionals earn enormous salaries and have minimal commitment to "the casue," many OCNA staff members lives have been touched, either directly or indirectly, by ovarian cancer.
OCNA is a great organization that truly is making a difference. I got involved with OCNA and volunteered at two events in Washington DC. Both events featured women chefs from around the area, and promoted the cause. I lost my Mom to Ovarian Cancer over ten years ago and every event I attend with OCNA makes me feel closer to her. Great people and great organization!
Ovarian Cancer National Alliance is the leader in new and innovative ways to get the word out there about ovarian cancer. OCNA's Survivors Teaching Students program takes a proactive approach by organizing survivor volunteers to present their stories to Medical, Nursing and Physician Assistants students. By putting a face to a disease, these volunteers are able to educate these students as they enter the medical field, on the signs and symptoms of ovarian cancer with the hopes of red flagging patients and diagnosing ovarian cancer sooner than it might have ordinarily been diagnosed. The responses to the STS program are staggering. Students leave not only teary eyed as they are totally engaged by these women, but ideally, these students leave the classroom educated about ovarian cancer, what to look for, signs and symptoms, and what to do if they suspect a women has ovarian cancer. OCNA is always at the cutting edge in their delivery of programs, education, advocacy and overall support to women who or know someone who is afflicted with this deadly disease. I have seen many not for profits, however, OCNA exemplifies "always trying harder" to provide the best support on all levels for such a worthy cause. Ovarian cancer has not only been known as the silent killer, but equally important, there has been silence in the overall awareness of this disease. OCNA is changing that and is really making a difference.
I ran on behalf of OCNA during a past Revlon Run event. It was an inspirational and motivational experience. OCNA has a team of very hard-working and dedicated people so it was an honor to represent them and the cause for which they serve.
I don't donate to charities much because I'm skeptical of how the money is spent however with this organization, not only was my donation simple to make through their website but their annual report allowed me to see where every penny was being spent. Well done!
Ovarian Cancer is one of the most lethal forms of cancer. From the site I learned that the key to survival is catching it early.
I have recently lost a loved one to Ovarian Cancer and turned to this organization for research and support. The organization provides great information about the disease and helped me identify early warning signals. This organization has helped many women identify symptoms of ovarian cancer and catch the disease in the early stages.
My sister is 5-year survivor and in honor of her cancerversary I threw an event to raise funds for the Ovarian Cancer National Alliance in hopes of raising awareness.
The Ovarian Cancer National Alliance is an organization close to my heart as I lost my Mother to Ovarian Cancer over 10 years ago. The events that the OCNA puts on are top notch and reach so many surviors and family members that have been affected by this disease. All the events I've been to since volunteering the past few years have always been a fun and positive experience. Every detail has been perfect and all the events have had incredible turnouts. It's really important to me to know that my help can make a difference in someone's life and I'm proud to help the OCNA in any way I can.
I recently lost a loved one to this disease and I needed to find resources for support groups to help with the grieving process. I came across OCNA's website through a google search and found some excellent resources for what I was looking for.
The Ovarian Cancer National Alliance is a very important and well run non-profit organization. So many women do not know the symptoms of this dreadful disease or realize how important it is to recognize them early. Education is needed in all sectors, including medicine,and more research is needed. The Ovarian Cancer National Alliance works hard and successfuly at education and awareness building and at research. The organization mixes sound non-profit management and passion for the cause beautifully. All of the leaders in the organization share a passion for saving women's lives, the intellectual grasp of the issues and the needs, and great compassion for those who have had the disease. The stories one hears at their meetings are compelling.
OCNA is a non-profit umbrella organization that brings together cancer activists, women's health advocates, health care providers and researchers in the battle against ovarian cancer. OCNA's website, www.ovariancancer.org, provides access to names of Gynecologic Oncologists, up-to-date diagnosis, treatment and information about genetic influences as well as breaking news in the ovarian cancer field. OCNA's goal is to improve the survival rate of women diagnosed with ovarian cancer. We work with health professionals in training (in Medical, Nursing, Midwifery, Physician Assistant Schools) what to look and listen for when working with women so they may be diagnosed early if they have symptoms of ovarian cancer. EARLY DIAGNOSIS MEANS INCREASED SURVIVAL TIME. OCNA's signature program, Survivors Teaching Students, works toward earlier diagnosis through survivors who tell their stories to students who are just beginning to work with Gynecology patients. Usually, three of us share our stories of diagnosis, treatment and our lives now. We hope to prevent the delays that lead to more than 81% of us being diagnosed late-stage and to encourage what we found was helpful. How to give bad news, ensure that hope survives and where to get help if needed are among the contents of these personal stories. We put a face to a dreaded disease. We show that while ovarian cancer is the most lethal of gynecologic cancers, there are survivors who continue their lives. Results of each panel's presentation are determined by two surveys filled out by students before and after they have heard the speakers. Group facilitators now enter data from each presentation online at OCNA's website. An Electronic Data System allows us to collect survey results and quantitatively evaluate the effectiveness of the presentations. OCNA stands alone in its Survivors Teaching Students signature program. A physician now working in a NYC Medical School recently told a 3rd year student that he himself had never forgotten the STS presentations he had participated in years ago. You won't, either, he told her. OCNA reaches out to the newly diagnosed and to those of us who have survived and want an effective way to help. OCNA is the prime resource for women like me and our families who are dealing with ovarian cancer.
The Ovarian Cancer National Alliance is a well-organized, effective, and much-needed organization, as evidenced by studies that show that the majority of women and half of all doctors are unaware of the symptoms of ovarian cancer. In addition, ovarian cancer has traditionally been a stepchild when it comes to funding for cancer research. OCNA, founded little more than a decade ago, has made great strides toward educating the public and medical professionals about ovarian cancer; informing women with ovarian cancer about all aspects of their disease, including resources; and uniting these women and giving them a voice at the state and national levels.
As an Ovarian Cancer Survivor I have found great strength, hope and determination after having been associate with OCNA. The staff is very friendly, willing and knowledgeable. I have attended 4 OCNA conferences and participated with 4 Capital Hill Days. The conferences are structured in such a way so that there is always a interesting speaker or lecture to attend
This was my second conference and once more, I loved it! I attended with the local Memphis leader and realize how much work we have to do.
I've been involved with the Ovarian Cancer National Alliance since it's first conference in 1998. The leadership training I received in the early years of the Alliance has helped me become a vocal advocate on a wide range of cancer issues. While the organization has grown in terms of the various activities it is involved in, the focus on women with ovarian cancer, their families and the future patients is kept in the forfront of the organization's aims.
I have been involved with the Ovarian Cancer National Alliance since 2002. I am currently a board member. It has been an honor to work with this group as they have grown to bring awareness about ovarian cancer to the general public, worked with the medical community, other national health organizations and Congress to change the face of this deadly disease.
Though I have not been personally touched by ovarian cancer, I have worked with the organization in a variety of fundraising and outreach capacities. The 12th Annual Ovarian Cancer National Alliance was an incredibly moving experience for me. The organization staff ran a tremendously informative and very special program. I was deeply touched by the stories from the many survivors whom I met and as a result, I have a renewed strength to continue to work with the organization.
This was my first OCNA conference and I was deeply impressed by the personal as well as the professional aspects of the program. The leading research was presented in a very focused manner. The tough issue of helath care reform was presented with clarity and directness. The emotional aspects of cancer surviorship were addressed and supported and nurtured. Every stage of the conference was first rate. It was a winner.
If you have been touched by ovarian cancer, you must know OCNA. They are the clearinghouse for all information about the disease and new treatments. They are also the umbrella for local chapters that work on getting the word about about awareness and that raise money for research. But the most amazing program is Survivors Teaching Students. Ovarian cancer survivors go into medical school classrooms and describe their experiences so that the doctors, nurses and other medical professionals of the future will keep this disease in mind.
While researching to understand ovarian cancer after being diagnosed in early 2007, I discovered "Survivors Teaching Students: Saving Women's Lives," the ovarian cancer educatiion program for medical students under the sponsorship of OCNA. As I am a living example of two things that have become my passion: early detection of ovarian cancer and timely referral of patients into the care of a gynecologic oncologist, I will share my story whenever the opportunity presents itself: as a guest speaker, facilitator, or writer for community outreach efforts. OCNA continues to support my education and commitment with attending their annual conferences the last two years in Washington, DC.; participating in Lobbying Congress on the last day of the conference. As well, they nominated me to participate this year as a Consumer Reviewer of the Department of Defense Congressionlly Directed Medical Scientific Research Panel for FY09 ovarian cancer program.
This organization has helped me immensely with information on ovarian cancer and becoming an advocate for the disease. I have attended 4 conferences held in Washington, DC and have gone to Capitol Hill on 2 of these occasions to speak with representatives regarding funding for ovarian cancer research and education. This organization also helped me become a member of the Survivors Teaching Students which enables us to go to medical schools and speak about our experiences with the disease to future doctors, nurses, and others in the health field. They also have an on-line support group that I am involved in daily to assist me and others with information and problems that come up with living with ovarian cancer.
How to tell my story -- from the depths of hell-Well let first start off with the diagnosis process for ovarian cancer symptoms or shoud I say the lack of disagnosis of the symptons. My first encounter occurred when the symptons of ovarian cancer started screaming in July of 07. I went to my GP because I felt bloated and my pants were getting tighter around my stomach. My GP said it was probably because I was going into menopause and she sent my on my way. So I didn't think much more about it and resigned myself to a larger size and that the bloating would eventually go away. Over the next two weeks, I needed to urinate frequently or it was more like the sensation of pressure and needing to urinate. So, I was seen by a nurse practitioner who told me it was probably a urinary tract infection and sent me on my with an antibiotic perscription. Two weeks passed by and I still did not get any relief from bladder pressure, plus now I was having trouble having a bowel movement. So again, I went to my GP, explaining my symptons and she prescribed a stool softner-Colace and Lactose-- and sent me on my way. Another week passed and I still had bowel movement problems, urinary pressure, and bloating. I went in to see my GP and finally, this time she performed a rectal pelvic exam and felt a large mass. She then scheduled a transvaginal ultra sound and blood work. I didn't know what to think and she didn't elaborate on what the possibilities of the mass meant. The transvaginal ultra sound revealed two large masses attached and covering over one the ovaries and my CA 125 read 191. I received a call from my GP the same day of my ultra sound and she said she wanted to see me the next day because the ultrasound looked "suspicious". This did not sound good to me. When I consulted with my GP, she said because my CA 125 was elvated and the masses looked "suspicious" she was referring me an on oncologist. That was the when I got a lump in my throat and felt scared for the first time during this whole ordeal. Oncologist meant cancer. When I went to see the surgeon gynooncologist, I took my sister and my niece because I wanted another set of ears to hear what was going to be said. The surgeon told me he was confident that the masses were beign because of my age--48 years old--and I was in good health. He didn't even want to suggest treatment options such as chemo because he didn't think it was necessary to go down that path. The masses turned out to be cancer--Stage IV ovarian cancer. The surgeon said he was sorry that it turn out to be cancer but he performed ultimal debulking and got rid every visible sign of cancer he could. The chemo would get any residual cancer including the mass on my liver. That's the first chapter of my story. As you can see the symptons were not silent--they were screaming yet I did not know anything about the symptons of ovarian cancer or I would have been more insistent on having my GP perform a rectal plevic exam from the beginning just to rule out cancer. But none of the medical professionals connected the dots until weeks had passed and the symptons became more acute. I don't know if it would have made any difference in the staging--I could have already been at stage IV. But, that's not the point--The point is educating women on the symptons and educating the GP's to first rule out ovarian cancer by performing at least a rectal pelvic exam when women first complain about the tell tell sypmtons of ovarian cancer. I am in remission now and am grateful to my family and friends who gave me the encouragement and strength to battle this monster. Let's find a test for early detection so the same story doesn't need to be told over and over again.
The Ovarian Cancer Naional Alliance has provided us, as a small local Ovarian Gynecologic Cancer Alliance in a small town, a larger National presence and a BIG voice. The legislative branch extends opportunities and include us in their year round monitoring and dogged lobbying on behalf of women's health issues in the government process. The good that they do is unmeasurable. The facilitators have nurtued us when we were just learning and beginning by providing awareness material and expertise. The Board and Officers continue to listen to our ideas, our concerns, our focus as it changes and incorporates the essence of all these good things into their annual business plan. We appreciate their ear as well as their voice. The organizers and planners of the National Conferance feed our need for knowledge and allow us time for kinship and comaraderie. We approach the "Hill" on Lobby day as an inspired Tide of Teal, determined to be heard and make a diference. Every conferance is differnt and each one has a particular character. It remains a good thing and an inspiration for the next year.
This organization is bringing together women with ovarian cancer and their supporters to help raise awareness, provide a sense of community and change perception. Surviving is possible, there are recognizable symptoms. Learn them and protect yourself and your the women in your life.