The World Ovarian Cancer Coalition works with a diverse group of nearly 200 patient advocacy organizations from around the world. Many of these organizations focus on ovarian cancer – but many have an interest more broadly in women’s cancers and/or women’s health. This special event held on June 23, 2022 explored the social and economic detriments that undermine access to good health for women – and the opportunities that may exist to work together to achieve change for women in relation to ovarian cancer and/or other health concerns.
Here are the initiatives and organizations mentioned in the video above:
Last week we shared the very sad news of Celina May’s passing with The Every Woman Study™️ Oversight Committee. Celina was a part of this dedicated group of international doctors and patient advocates that is overseeing the largest ever study of the experiences of women with ovarian cancer in low- and middle-income countries. Response to the news about Celina from our colleagues on the Committee was immediate and heartfelt.
Celina will be greatly missed by all of us that had the great privilege to meet and work with her. But we firmly believe that Celina’s contribution to The Every Woman Study™️, which has the potential to drive significant change for the many, many women diagnosed with ovarian cancer, will be long-lasting and far-reaching.
Sadly, the many women currently living with or to be diagnosed with ovarian cancer in the future will not have the honour of knowing Celina, but they will directly benefit from her commitment and passion. The Every Woman Study™️: Low- and Middle-Income Edition has the potential to be undertaken in up to 31 countries collecting the views of up to 2.500 women. At its conclusion, we will finally have essential evidence about the experiences of women in these countries which will form the foundation for change to improve outcomes for those diagnosed with the disease.
Celina generously shared her views with us on every aspect of the Study from the perspective of what someone living with the disease should want and expect from us – but also professionally as an experienced communications expert. Malaysia is one of the countries that is leading the way and likely to be one of the first to start implementing the Study at country level. Celina, alongside team Malaysia, Professor Dr. Woo Lin Ying and Sook Yee Yoon worked hard and with urgency on behalf of women in their country and beyond. Her passion and fierce determination to support other woman and to make a difference in her own country, led to Malaysia’s very first support group for women with ovarian cancer, Ovarian Cancer Malaysia. We were bowled over by how quickly and professionally Celina set out to fill this gap and we are delighted that this group is now established and will carry Celina’s legacy onward. Reassuring us as we move towards the future is this quote from His Holiness the Dalai Lama, “Just as ripples spread out when a single pebble is dropped into water, the actions of individuals can have far-reaching effects.”
Finally, in the many conversations that we had with Celina she often mentioned her family and her concern about the impact of her ovarian cancer on those she loved most. We know how heart-breaking it must be for her family, loved ones and many friends. We want you to know that in her life Celina made a difference and we are dedicated to continuing our work with our fond memory of her as a guiding light. We think Co-chair Tracey Adams summed it up best, “May we use Celina’s passion and memory to further drive us with this Study and advocacy for many more.”
We are excited to share our newest awareness raising campaign that we will be launching to mark Pride month (June) – entitled “No Person Left Behind”. This is just the beginning of work we will be doing to ensure that we better represent all those who are or who could be affected by ovarian cancer.
As a first step, the campaign in June will focus on reflecting the experiences of the LBGTQ2+ community when it comes to ovarian cancer awareness, diagnosis, treatment and overall care. We are recruiting Patient Experts to advise us and inform the campaign and ways forward as we continue to develop more diversified content. If you are interested in becoming a Patient Expert we would love to meet with you – just drop us a line and we can set up a call.