You Are A Marvel
YAAM (You Are A Marvel)
The Sickle Cell Disease Foundation, in partnership with the Center for Inherited Blood Disorders and The Hills Tandem, is leading the You Are A Marvel (YAAM) initiative.
Inspired by the words of cellist Pablo Casals, who recognized each person as a marvel, YAAM strives to honor each person touched by sickle cell disease (SCD) as the marvel they truly are rather than just another data point that is too common in today’s healthcare.
YAAM is a novel and holistic approach to patient-centered care and personalized medicine. A ground-up endeavor, created by and for people living with SCD, to improve quality of care, health outcomes, and health equity. In addition the initiative can grow to reach other underserved patient populations managing complex chronic disease who will benefit from YAAM’s approach.
The YAAM initiative started in 2019 with a desire to quantitatively capture the experiences of individuals living with SCDF as a way to amplify the patient voice. Through the collection and preliminary analysis of longitudinal patient-generated health data (PGHD) we discovered the potential to identify triggers to SCD symptoms. One example how YAAM might be used in the future is to reliably predict a pain crisis in time for intervention, thus avoiding the crisis altogether and/or minimizing tissue damage caused by hypoxia.
With the help of the SCD community YAAM has achieved significant milestones in advancing an innovation that could radically improve disease management. Over sixty-five adults living with SCD have collected six weeks of real-world data, including biometric, environmental, symptom, and other relevant data. This real-world data provides the start of information needed to develop highly personalized algorithms that individuals may use to optimize treatments and increase self-agency in daily care as well as decisions with their health providers.
We could not be doing this groundbreaking work without the involvement and collaboration of individuals who enrolled in the studies and provided feedback on future concepts. As the initiative continues to unfold, we will rely on the SCD community and individuals for guidance and insights into identifying ways to improve quality of life and health outcomes beyond medications and treatments alone.
If you are interested in learning more and/or partnering with us on this initiative, please contact the YAAM Team