Sickle Cell Network

SCN was founded in 1995 after a group of stakeholders associated with the Sickle Cell Summer residential camps and other stakeholders in the Sickle Cell community met in response to feedback about the many challenges confronting Sickle Cell families surrounding health care, patient advocacy, and other related issues. The stakeholders agreed that a grassroots organization would both provide direct services to the Sickle Cell community and elevate Sickle Cell place in the national agenda. Since 1997 when SCN assumed responsibility of the Sickle Cell Summer Camp, its premier program became providing the summer camp experience to over Sickle Cell youth and adults. In the SC camp setting, these youth can learn about their disease from their peers’ perspective and develop new skills. They need to meet people who have the same illness as themselves and share stories and information about how to cope with the challenges of living with the disease. At camp they can discuss life experiences and strategies such as how to best develop academic skills, achieve social adjustment, and make wise choices when selecting a career and a mate. Children, who were campers in the early days, became counselors and camp staff as they grew older, and many of them still attend SCN’s fundraising and social events. Some of them went on to work in other organizations.