YSC Affiliate Leadership Conference

I went to Houston this weekend to attend a leadership conference for the Young Survival Coalition, better known to everyone as my online breast cancer support group. My girlfriend, Julie, (who I met through the YSC) recently decided to start a local community volunteer group here in Miami. She asked me to assist her in getting the organization up and running -- formulating ideas for the group's exposure and fundraising activities. For all that Julie and I have been given in the way of emotional support at YSC, I think it's a perfect way to pay it forward. As founding members of our local group, we were required to attend this leadership conference in Houston. This annual conference provides all affiliates an opportunity to meet and network.

The conference was so well organized and well attended. Honestly, I was a little surprised. I always thought of the YSC as more or less an "online support group." It never really occurred to me that this was also a rapidly growing organization structured much like any other corporation with a CEO, Presidents, employees, etc., with a mission for research and advocacy. In fact, The Young Survival Coalition is the only international, non-profit network of breast cancer survivors and supporters dedicated to the concerns and issues that are unique to young women and breast cancer. Through action, advocacy and awareness, the YSC seeks to educate the medical, research, breast cancer and legislative communities and to persuade them to address breast cancer in women 40 and under. The YSC also serves as a point of contact for young women living with breast cancer.

Unlike their post-menopausal counterparts, young women diagnosed with breast cancer face higher mortality rates, fertility issues and the possibility and ramifications of early menopause. The YSC seeks to change the face of breast cancer by: advocating to increase the number of studies about young women and breast cancer; educating young women about the importance of breast self-examination and early detection; and being a point of contact for other young women with breast cancer.

Incredibly, the organization was founded only 9 years ago in 1998 by three young breast cancer survivors, Joy Simha, Roberta Levy Schwartz, and Lanita Moss (pictured above left to right between me and Julie). All under the age of 35 at diagnosis, they were discouraged by the lack of information and resources available to young women, and concerned about the under-representation of young women in breast cancer studies.

It was such an honor to meet these ladies in person and to be able to express how much the YSC meant to me right after my initial diagnosis and during my treatment. Lanita was visibly moved by what I had to say (although that glass of red wine could have had a little something to do with it too ... kidding), and she told me it warms her heart to know that an idea that was tossed around at a coffee shop in New York City would become what it has. She said it seems so surreal that this organization has grown in the way it has and that it is getting fast recognition among the likes of more notable breast cancer non-profit groups such as the Susan G. Komen Foundation.

They say that you have to be the change you wish to see in the world. This conference encouraged me to feel through my local participation in the YSC, I can at least be a small beacon of hope and change for other young survivors.