Through a spirit of social justice and equity, and the passion of doctors, patients, and advocates, Oakland is home to critical developments in sickle cell research and treatment. From the first sickle cell clinics set up by the Black Panther Party, to a revolutionary clinical trial involving CRISPR, this series explores the frontiers of science and health equity by telling the stories of the people who create change.
This series is dedicated to Jazz Amira Hardrict, who passed away on September 5, 2022.
Jazz was born on December 29, 2008 in Torrance, CA. Jazz got her name because her mother loved jazz music. Jazz had sickle cell disease and spent a lot of her days in UCSF Benioff Children's Hospital Oakland. Most of the Hematology and Oncology staff there knew, loved, and spoiled her. She created something called, "Jazz Bucks," which nurses could earn for extra Jazz time.
Jazz developed a love for performing arts at a very young age. She was just two-years-old when she appeared on stage at Skyline High School in Oakland under the direction of her grandmother. As a child, she performed in Rent, Aladdin, Dream Girls, and Funny Face. At the age of 8, Jazz landed her first lead role as Simba in Three Cross Church’s production of The Lion King. Jazz also portrayed young Cinderella in the African-American Shakespeare Company's production of Cinderella and starred as Princess Jasmine in Joaquin Miller's production of Aladdin. In 2018, Jazz was featured in her first short film role, entitled, "Jazz in Wakanda."
Jazz loved cooking, baking, drawing, playing in makeup, doing her nails, all things pink and lavender, glitter and rhinestones, fur and luxury.
Often referred to as "a light," Jazz always had a strong attachment to her family and community. She quickly connected with people and was adored by nearly every child she came in contact with. From birth, Jazz inspired people to love. She was a member of the Imani Community Church, serving in the children’s choir, dance ministry, usher board, and children's church.
In June 2022, Jazz received a bone marrow transplant, with her father enthusiastically serving as the donor. Her indisputable light and bravery shined through even in the face of unimaginable suffering. On Monday, September 5, 2022, she was released from her suffering and slipped quietly into eternity. She will be deeply and dearly missed by everyone who had the privilege of being touched by her spirit.
Episode 1: The Challenge of Sickle Cell
What happens when the struggle for reacial justice meets a complex medical condition? Sickle cell disease primarily affects communities of color, and the search for treatments requires work on two fronts: innovative science and addressing inequity. This episode helps us understand what sickle cell is, its affects and how treatments have developed through the experiences of Oakland patients and doctors.
Episode 2: Why Oakland?
Oakland was home to the Black Panther Party, a group that was key to driving awareness and action on treating Sickle Cell. The city's tradition of activism has supported successive generations of advocates in public health. Meet the doctors, patients and community members who call Oakland home.
Episode 3: Living with Sickle Cell
What is it like to have sickle cell? Hear the from the people navigating the unpredictability of the disease. From their stories and experiences, it’s clear that understanding the human side of medicine is just as important as the clinical expertise when it comes to treatment.
Episode 4: The CRISPR Breakthrough
Sickle cell treatments have developed slowly, but partnerships, collaboration, and the scientific revolution of CRISPR gene therapy is offering new promise. How have treatments developed and what are the issues that come with a big step forward? This episode examines the science behind sickle cell therapies, and the potential of a new clinical trial in Oakland.
Episode 5: What Comes Next?
The potential of CRISPR is enormous, but how does cutting-edge science get applied in the real world? We hear from patients on their views and the need for strong relationships to care providers. The powerful innovation also means thinking about how treatments can be made accessible, both in the US and globally, and the unique role UCSF and the UC consortium as public institutions play the in Oakland clinical trial.
Episode 6: Love Finds a Way
In our series finale, we hear about how people are living with the disease, and from the powerful network of people who have spent their lives working on behalf of the community to treat and ultimately attempt to cure Sickle Cell. At the core of this commitment is the love that exists between the health care providers, advocates and families involved.