My sister has been living with lupus for years. The LFA GOC has been there for education, resources and support. Together with my family we believe in being strong advocates for the their mission. We hope that someday there be a cause and a cure. Before she went to the foundation she felt confused and isolated. Today she thrives and is a true champion for this mysterious disease.
As a Board member, it has been a privilege to serve.
Jeannine Valenti
I am a Lupus patient and a support group facilitator for the Lupus Foundation of America Greater Ohio Chapter Inc. First and foremost, from the perspective of a lupus patient, this nonprofit provides exemplary programs for new patients and teens, educational summits and support groups through volunteers and staff throughout the state of Ohio. As a support group facilitator, this nonprofit provides the resources and training that equips the volunteers to support and educate lupus patients as they learn to manage their lupus. As a board member, the CEO and staff of this nonprofit work tirelessly, connecting and collaborating with stakeholders and legislators to obtain the funding needed to continue to provide the education, resources and support needed by lupus patients and their families.
I was diagnosed with Lupus when I was 27, that was 35 years ago. I knew nothing about it and it sounded very scary. I found the lupus foundation searching for information. The staff there was a godsend! They made me feel at ease, shared their stories, showed me their library and sent me home with a packet of information. Since then I have always been able to turn to them if I needed information or understanding. Suzanne Tierney And her family have been especially empathetic, helpful, and warm for the whole 35 years. My husband and I are lifetime members.
When my twin and I were diagnosed with lupus at the age of thirteen we really only had our doctor, research coordinator and nurses as a support team. They were, and still are, awesome, but when it came to our social life it was just us and we felt isolated because of our disease. Which lead to me breaking doctors orders and going out in the sun to spend time with friends that didn't understand the impact of lupus in our lives. I also quit taking my medications for a while when I was fifteen because I was angry, in pain and felt different. When our doctor told us about the Lupus Foundation of America and we got involved it changed everything for us. We learned to advocate for ourselves in school, with family and with friends. We learned helpful ways to better manage our disease and we got connected with other people with lupus -other people our age. We no longer feel alone, isolated and different. We now feel empowered and have a sense of community.
As a lupus patient diagnosed in 1989 I immediately contacted the Lupus Foundation Greater Ohio Chapter. I am still invloved with this chapter because they have the latest information on lupus research, new medicines and trials. They also have great programs for educating myself about the disease and providing support when I need to talk with people who understand what I am experiencing.