Sickle Cell Advocate of the Year: La’Shardae Scott
La’Shardae Scott, a mother of three amazing boys. As a mother of two children living and thriving with sickle cell disease, I knew advocacy was needed in my community. When my first child was diagnosed with sickle cell in 2015, I reached out to local Ohio organizations to seek information. Unfortunately, there was a lack of education and resources available. As a Detroit native, I reached out to the local sickle cell clinic and worked with a doctor who educated me on the disease. At that moment, I became a passionate advocate for those affected by sickle cell disease.
Previously worked as a Parent/Patient-Certified Community Health Worker for the Sickle Cell Disease Association of America Michigan Chapter in Detroit under Dr. Wanda Whitten-Shurney. During my work experience with Dr. Shurney, I authored a children’s book entitled “What Dr. Shurney Taught Me,” written through the eyes of my three-year-old son to help educate and encourage children, siblings, and their caregivers.
Currently, I hold the positions of President and CEO at the Scott Center for Observation Treatment and Transition, as well as Project Director and Newborn Screening Coordinator for Region III Neighborhood Health Association’s Sickle Cell Project of Northwest Ohio. Additionally, I am a part-time instructor for master’s students at the University of Kentucky through online platforms. I obtained a bachelor’s degree in social work and communications from Eastern Michigan University, as well as a master’s degree in Mental Health and Chemical Dependency. I also completed graduate certificates in Non-Profit Management and Grant Writing. I am presently pursuing a doctorate at the University of Kentucky in Social Work, specializing in Administration and Leadership.
More about La’Shardae Scott: Here.
Digital Advocate: Faith Adjei-Sarpong
Faith Adjei-Sarpong is a passionate advocate dedicated to raising awareness and improving healthcare access for individuals affected by sickle cell disease (SCD). As a Ghanaian-American born and raised in the vibrant city of Houston, Texas, Faith embodies a blend of cultural richness and American resilience. Having felt the impact of SCD on her life from a young age, navigating healthcare challenges and societal misconceptions, Faith’s experiences ignited her advocacy passions.
Currently pursuing a Master of Public Health degree and applying to medical school, Faith is deeply committed to advancing public health initiatives and equitable healthcare policies. She complements her academic pursuits through active involvement with Sick Cells and the Sickle Cell Association of Houston (SCAH), serving as an ambassador and board member.
Driven by a desire to address systemic racism, sexism, and religious bias in healthcare, especially concerning SCD and chronic pain, Faith’s advocacy aims to challenge misconceptions, promote understanding, and empower fellow warriors. Through engaging social media platforms, she shares her personal story, educates about SCD, and fosters a supportive community.
With her fierce determination and unwavering resilience, Faith Adjei-Sarpong is a beacon of hope and inspiration. Her tireless efforts to raise awareness, advocate for change, and improve access serve as a testament to her commitment to making the world better for all affected by SCD.
More about Faith Adjei-Sarpong: Here.
Youth Sickle Cell Advocate: Ayana Johnson
Ayana Johnson, a senior at Nansemond River High School and an honors student, excels as a violinist, dancer, entrepreneur, and serves as the National Teen Ambassador for the Sickle Cell Disease Association of America. Recognized by the National Honor Society, National Beta Club, and Suffolk Art League, she is dedicated to advocating for individuals with Sickle Cell Disease. Ayana has made significant strides as a Youth Legislative Advisor to Delegate Candi Mundon King, pushing for legislation that improves care for sickle cell patients. She founded Ayana’s Hope Cells, a nonprofit aimed at providing comfort to hospitalized pediatric patients, demonstrating her commitment to supporting those affected by chronic illnesses. Her engagement extends to discussing with President Biden the need for better care for sickle cell patients, focusing on reducing medication costs, obtaining FDA approval for more drugs, and increasing research funding. Furthermore, she has expanded Ayana’s Hope Cells by partnering with the American Red Cross to deliver Build-A-Bears to hospitalized children, showcasing her dedication to easing the discomfort of young patients. Ayana’s diverse interests include classical violin, reading, music, travel, family time, film/photography, and journaling, illustrating her well-rounded character and commitment to her advocacy work.
More about Ayana Johnson: Here.
HCP Advocate: Maya Bloomberg
Maya Bloomberg is a board-certified Family Nurse Practitioner, having earned my Bachelor’s and Master’s of Science in Nursing degrees from the University of Miami. My nursing career began as a bedside nurse on a med/surg telemetry unit, where I first encountered sickle cell disease, initially only understanding its pain and anemia. I was raised to treat everyone with dignity and respect regardless of their background or appearance, and truly believe this has enabled my success. My hard work, dedication, and compassion were quickly recognized, and I became charge nurse, then unit manager. I was awarded the DAISY Award and Nurse of the Year during my bedside nursing years.
I have worked as a Classical Hematology Nurse Practitioner since 2014, specializing in sickle cell disease and congenital bleeding disorders. This has highlighted significant health and racial disparities in modern medicine. Recognizing the misconceptions around sickle cell disease and my patients’ stories of judgment and mistreatment, I quickly became an ally and advocate.
In the clinical setting, I care for over 350 adults with sickle cell disease across two institutions, in addition to hundreds of individuals with bleeding and clotting disorders. Over the years, I have fostered professional relationships, allowing for a multidisciplinary approach to deliver high-quality care.I advocate for my patients and proactively find solutions, initiating necessary conversations for support to ensure treatment access and bring attention to disparities. To reduce ER visits and hospitalizations, I created an outpatient sickle cell hydration and pain management offering at both institutions’ Infusion Centers, which previously only provided oncology care. I am currently working to acquire funding and space for a dedicated Sickle Cell Day Hospital. Understanding reported issues with ER care, I am involved in a Quality Improvement project to improve ER care and follow sickle cell guidelines. I also serve on a state panel to improve care access, treatment, and reduce disease burden for sickle cell patients in Florida. My recent efforts alone secured our institution a position in the American Society of Hematology’s SCD program to enhance our sickle cell community commitment.
More about Maya Bloomberg: Here.
Community Partner: Holly John (Agios Pharmaceuticals)
Holly John, the Senior Director of Patient Advocacy at Agios Pharmaceuticals, embarked on her journey with the sickle cell disease (SCD) community in 2017 during a patient advocacy meeting. This experience sparked her passion for supporting sickle cell warriors, teaching her lessons in resilience, community support, and gratitude. Inspired by the strength and mutual care within the community, John has since dedicated herself to integrating patient experiences into her work, emphasizing a patient-first approach in initiatives like the RISE UP trial.
Holly’s efforts at Agios Pharmaceuticals have focused on elevating the patient voice, increasing clinical trial awareness, and celebrating the SCD community’s unique talents. She has facilitated forums for sharing personal stories, collaborated on research projects to raise awareness, and supported artistic expressions to highlight the community’s resilience and creativity. Through campaigns like RISE UP, John has significantly increased engagement and interest in clinical trials, proving the importance of patient involvement in drug development. Her work with the SCD community continues to be guided by the lessons of strength, care, and gratitude she has learned, making a meaningful impact in the field of patient advocacy.
More about Holly John: Here.