Novartis is teaming up with Grammy-nominated singer, film and Broadway star Jordin Sparks and the Sickle Cell Disease Association of America, Inc. (SCDAA) to launch Generation S, a national sickle cell disease (SCD) storytelling project that will help rewrite the SCD story for generations to come. Generation S encourages anyone touched by SCD to help inspire the sickle cell community and educate the nation by sharing their story.
“Although I didn’t have the honor of knowing her throughout her journey, my stepsister Bryanna battled sickle cell disease her entire life,” said Jordin. “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.”
People can go to JoinGenS.com to share their experiences with sickle cell disease starting today through the end of November as written stories, photos, or audio or video recordings. Submissions will start to be shared later in the fall, and the collection of stories from around the country will come to life in Feb. 2019. A few participants will also have the opportunity to meet Jordin in person and to work with a professional storyteller on a video to capture their personal experience with sickle cell disease.
“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 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.”
While SCD is considered a rare disease, it is one of the most common genetic disorders in the U.S., and nearly 100,000 Americans are living with the condition.1,2 SCD is a lifelong condition that causes ongoing damage to blood vessels and organs.3 While people of all ethnicities can have the disease, people of African descent are disproportionately affected.4 People with SCD often experience recurrent episodes of acute, severe pain, which can eventually become chronic.5 Importantly, pain is more than a physical symptom—it can impact emotional and social wellbeing.6
“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, U.S. 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.”
1. Mandal A, Leger R, Graham L, et al. An overview of human genetic disorders with special reference to African Americans. Journal of Bioprocessing & Biotechniques. 2015 October 27. Doi:10.4172/2155-9821.1000e139.
2. American Society of Hematology. State of sickle cell disease 2016 report. Available from:http://www.scdcoalition.org/pdfs/ASH%20State%20of%20Sickle%20Cell%20Disease%202016%20Report.pdf. Accessed on July 17, 2018.
3. Steinberg M. Management of sickle cell disease. N Engl J Med. 1999;340(13):1021-1030.
4. Jain D, Lothe A, Roshan C. Sickle cell disease: current challenges. Journal of Hematology & Thromboembolic Diseases. 2015 Nov 10. Doi: 10.4172/2329-8790.1000224.
5. Adams-Graves P, Bronte-Jordan L. Recent treatment guidelines for managing adult patients with sickle cell disease: challenges in access to care, social issues, and adherence. Expert Review of Hematology. 2016;9(6):541-552.
6. Anim M, Osafo J, Yirdong F. Prevalence of psychological symptoms among adults with sickle cell disease in Korie-Bu Teaching Hospital, Ghana. BMC Psychology. 2016;4(53):1-9.
(Source: Novartis Pharmaceuticals Corporation)