Survivor and MOCA Research Advocate Peggy Jennings joined other ovarian cancer survivors in Indianapolis at the Ovarian Cancer National Alliance’s Midwest Regional Conference earlier this month, of which MOCA was a co-host. Below is Peggy’s recap of the conference.
This month, the OCNA Midwest Regional Conference brought together survivors, caregivers and medical professionals to learn about research and clinical trials, discuss quality of life issues and share ideas on how to get even more involved in ovarian cancer advocacy. The conference was a wonderful chance to network with our colleagues from other partner member groups from Michigan, Indiana, Ohio and Wisconsin.
The day began when Cara Tenenbaum, OCNA’s vice president for policy and external affairs, explained OCNA’s role in ovarian cancer advocacy and research. OCNA is the nation’s leading advocacy, education and awareness organization working to conquer ovarian cancer. OCNA also represents the needs of women with ovarian cancer to the federal government and advocates increase funding for ovarian cancer research.
After the keynote, panelists from each state shared ideas on local programs and initiatives that further the cause. There was discussion on the importance of Survivors Teaching Students and the expansion of this program to physicians outside the metropolitan areas as well as to nurse practitioners.
My presentation as a MOCA representative detailed the role of and the need for research advocates to participate in grant review for a variety of grant making institutions. Because many researchers do not have direct access to patients, the introduction of the human element to the research process is of significant importance. Regarding the training and reading involved, I emphasized the need for clear communication between the world of medical science and the patient experience. I then traced the progress of one of the grants MOCA funded in 2007 – the folate receptor alpha vaccine – and how it has led to a clinical trial at Mayo that began this past January. You can see all the presentations from the conference here.
Doctors from Indiana University Medical Center shared insights on current trials with Trinova, a phase 3 clinical trial with paclitaxel (AMG 386). One of the doctors also spoke about the background of clinical trials and the process that leads up to a drug going into a trial.
The day closed with presentations on caring for the whole patient, not just the physical but also the emotional and social needs at the time of diagnosis, as well as post treatment. All in all, the conference was an excellent way to connect and learn from others.