It was the first time Rochester had heard of the condition, which leads to pain in various parts of the body due to the lack of oxygen circulating.
“In the 70s there was no education, no materials or resources to help families affected,” she said. So she decided to inform herself.
“I took it upon myself to look for materials and to educate myself to help my daughter,” she said. Her determination led her to others in the same situation and soon, families affected by the disease started to gather in Rochester’s basement in St. Albans.
Out of that grew the Sickle Cell Advocacy Network (QSCAN), the nonprofit organization that is another home for many.
Located at 207-08 Hollis Avenue, QSCAN helps between 300-400 families by offering a number of free services, from support groups for families and individuals affected by the condition to referrals to state and local services.
The organization receives funding from local legislators as well as individuals and Rochester works full time to make her cause more well-known, visiting schools and community health fairs, handing out educational materials.
“We work tremendously advocating for these families that often spend most of their time in the hospital,” she said.
Currently there is no cure for the disease but successful bone marrow transplantations have been done on patients and Rochester’s daughter is still alive despite the condition. She is married with three sickle cell-free children.
Rochester stressed that more needs to be done in terms of advocating for sickle cell research and QSCAN, which was recently named the official New York chapter of the Sickle Cell Association of America, is doing its part to provide a tight-knit community of support for individuals.
“Some have been with me since they were babies; some are grown up and married” she said. “The reward I get is from them.”