Breast Cancer Survivor & Boston Influencer Built Cancer Patient Community
BOSTON (CBS) - Throughout high school and into college, Alicia Staley of Middleton dreamed of being an astronaut. A quick look around her home office and you will see a small model space shuttle and NASA stickers all over her laptop.
"Unfortunately, I had to give up my dream of being an astronaut after being so sick."
Alicia was diagnosed with lymphoma during her sophomore year at Syracuse University. She managed to stay in school while enduring months of grueling chemotherapy and radiation.
"It was tough. I felt extraordinarily alone," she recalled.
She beat the lymphoma, only to be diagnosed years later with breast cancer. This time she didn't feel alone, thanks to a friend who suggested she look for support using social media.
"Within 20 minutes of joining Twitter, I felt like I hit the lottery," she said.
After connecting with others battling cancer, Alicia and two other women decided to start a weekly Twitter chat using #BCSM for Breast Cancer Social Media. They had 75 people join the chat that first night in July of 2011. The community has grown ever since.
"We can run a one hour chat and receive upwards of 5 million impressions," she shared.
Alicia invites doctors, researchers, and drug companies to share information with the community every Monday night, and they rarely skip a week.
The #BCSM community has done more than just offer information and support for people battling breast cancer. It is also helping researchers look for new treatments.
"I think we live in an era where social media is critical in research," explained Dr. Corrie Painter. She is the director of the Broad Institute's Metastatic Breast Cancer Project. Researchers from MIT and Harvard gather information from patients about treatments, genetics, and outcomes. All of the patients came from the #BCSM community.
The project has created a massive database of information that is available to scientists around the world. The hope is to come up with treatments that will improve the quality of lives for those living with metastatic breast cancer.
"Then eventually, obviously, the hope would be to cure people," Painter said.
It's a project that, according to Painter, would not be possible without Alicia Staley and the community she built on Twitter.
"Alicia Staley is absolutely an influencer," she said.
#BCSM was the first of many similar communities. There is now a #LCSM for Lung Cancer Social Media, #CCSM for Colon Cancer Social Media and dozens of others.
Alicia could have made a lot of money promoting certain drugs, but she refused many offers, wanting to keep the community non-biased information for patients. She travels the world and speaks about breast cancer and the power of social media.
"It's changed my life."
This is work that she loves, but still, Alicia hasn't entirely given up on her dream to travel to space.
"Maybe if Twitter needs to send somebody to the moon someday, they'll send me. I'm still open to that."
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