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.
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.
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.
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.
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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.
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 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!