Singer Jordin Sparks has teamed up with Swiss pharmaceutical company Novartis for a disease awareness campaign which aims to share the stories of individuals living with sickle cell disease across the US. The project – dubbed, Generation S – will use multimedia submissions from patients with sickle cell disease to share a collection of stories later this fall.
“Although I didn’t have the honor of knowing her throughout her journey, my stepsister Bryanna battled sickle cell disease her entire life,” said Sparks. “Even though we were stepsisters for a short period of time, it was the closest I’ve ever come to the disease and its struggles. I hope that Generation S will help to change how we think about sickle cell and I am proud to lend my voice to our collective stories.”
While almost 100,000 people in the US have been diagnosed with sickle cell disease, it’s still considered a rare condition. These patients produce misshapen red blood cells which tend to stick together inside vessels to form clumps and impede the normal flow of blood. This prevents tissues from receiving enough oxygen, causing damage and severe pain known as vaso-occlusive pain crisis.
“Through Generation S, we hope to help people understand more about sickle cell disease, including their family genetic risk factors for passing the disease on to their children,” said Beverley Francis-Gibson, President and Chief Executive Officer of the Sickle Cell Disease Association of America (SCDAA). “We are thankful for the opportunity to work with Novartis to share powerful stories about sickle cell disease that too often have gone unheard.”
By signing up at JoinGenS.com, people can submit stories, photos and audio or video recordings to shape the perception of what sickle cell is and how it affects real people. A few individuals will also be offered the opportunity to meet Jordin Sparks and take part in the creation of a video led by a professional storyteller.
“Working with the sickle cell community, we hope to educate people about the disease and raise awareness of the significant impact it has on the lives of patients and their loved ones,” said Ameet Mallik, Executive Vice President and Head, US Oncology at Novartis. “In partnership with SCDAA and Jordin Sparks, our goal is to inspire people who are touched by this difficult condition to help them to lead strong, vibrant lives.”
Novartis is currently developing an antibody drug designed to treat patients with sickle cell disease. In the Phase II clinical trial results released earlier this year, crizanlizumab was found to successfully extend the period between one pain crisis to another.