Patient & Family Steering Committee

Revee Agyepong

Revee is a 28-year-old registered nurse specialized in Neonatal Intensive Care and currently working in the Pediatric Hematology Clinic at the Stollery Children’s Hospital as the Sickle Cell Disease Nurse. She had an allogenic stem cell transplant to cure sickle cell anemia on November 9, 2017, at the Tom Baker Cancer Center. After 25 years of hospital admissions and countless treatments, Revee became the first adult in Alberta to receive a stem cell transplant to cure sickle sell anemia. She is a member of the Sickle Cell Transplant Alliance for Research, Not Just You Sickle Support Organization, and the Canadian Hemoglobinopathy Nurses Group. She is passionate about encouraging, supporting and advocating for the sickle cell community.

Rae Blaylark

Rae Blaylark is the Founder and Chief Executive Officer of Sickle Cell Foundation of Minnesota as well as a proud mother of a young adult living with sickle cell disease. Ms. Blaylark founded Sickle Cell Foundation of MN as a means to increase local and national awareness of sickle cell disease, elevate voices of the community and improve healthcare outcomes in this population.

Over the past 17 years, Ms. Blaylark has served on several state and national advisory committees and has represented the sickle cell community in various professional roles, including blood and marrow donor recruitment, pediatric care coordination, hemoglobinopathy counselor, program coordinator, community liaison and community health worker. Ms. Blaylark brings a unique perspective and experiences into her role as a community leader who has navigated the sickle cell space both outside of the healthcare system as a caregiver and on the inside of the system as part of the pediatric clinical care team. It is through this dual lens that Ms. Blaylark continues to impact the trajectory of many individuals, families and professionals, all of whom have a critical role in improving the outcomes of this precious population.

Marlissa Phillips

Marlissa’s middle daughter was born with sickle cell disease. She began chronic blood transfusions when she was eight years old. After much prayer, Marlissa and her family decided to pursue a bone marrow transplant when her daughter turned 15. While her sisters were not a match, they were blessed to find a donor through Be The Match. Marlissa’s daughter is healed of sickle cell disease but experienced graft vs. host disease. Following several years of treatment and medication, the GVHD is managed.

Marlissa and her family believe that their journey compels them to do all that they can to contribute to the road to curing sickle cell disease.

Tolulope (Tolu) Rosanwo, MD

Tolu is a current pediatrics resident at the Boston Combined Residency Program at Boston Children’s Hospital and Boston Medical Center. Her keen interest in sickle cell disease is greatly owed to having siblings and many loved ones living with SCD. Tolu completed her undergraduate studies at the University of Chicago where she wrote an honors thesis under the mentorship of John Cunningham, entitled The Role of Krüpple-Like Factor 1 in Erythroid Differentiation. She attended Case Western Reserve University for medical school, and there solidified her interest in pediatrics, creating the “Sickle Cell Buddy Program,” a connecting point for chronically transfused children/teens with SCD and medical student volunteers. Additionally, she received the American Society of Hematology Minority Medical Student Award for her contributions to work led by Jane Little and Umut Gurkan studying the impact of vaso-occlussive crisis on red cell adhesion. She interrupted her medical education to participate in the Howard Hughes Medical Fellows Program for two years at Harvard Medical School with George Q. Daley as her mentor. Her work modeling sickle cell anemia with induced pluripotent stem cells received multiple awards including the ASH HONORS Award and Abstract Achievement Awards. She has presented this work at the American Society of Hematology annual meeting, International Society for Stem Cell Research, the New York Academy of Sciences, the University of Oxford and more. She has also written a textbook chapter on the critical care of sickle cell patients. 

Tolu hopes for a world where every child and adult can be safely cured of SCD with safe, effective and accessible intervention and plans to complete a hematology/oncology fellowship post-residency.

Priscille-Nice Sanon

Priscille-Nice Sanon is a sickle cell survivor. She was diagnosed with Sickle Cell type SS at birth. Due to complications from this disease, she has received over 100 blood transfusions and a bone marrow transplant. She is involved in patient engagement and has a passion for health research. She graduated with a master degree in pharmaceutical science: pharmacoepidemiology from Université Laval. She is also involved with the Quebec SPOR unit as a patient coordinator for Université Laval and collaborated on several research projects as a patient. Being a patient partner allowed her to put her passion for research and volunteering at work while being able to make a lasting impact on health research.

Jeffrey Kwasi Zuttah

 Jeffrey (Jeff) Zuttah is a business development professional for Quartet Health. At Quartet, Jeff is responsible for leading Quartet’s growth through partnership with the country’s leading regional health plans. 

In addition to his work at Quartet, Jeff is committed to his community. He is a passionate patient advocate for those with sickle cell disease, where, in 2017, he was selected as one of Black Enterprise’s 100 Men of Distinction for his advocacy work. Jeff is also a member of the Robert S. Brookings Society at the Brookings Institution, a nonprofit public policy organization whose mission is to conduct in-depth research that leads to new ideas for solving problems facing society at the local, national, and global level.

Jeff began his career in New York City as an analyst in Morgan Stanley’s Investment Banking Division before moving to Washington D.C. and serving as a Policy Advisor for the Obama Administration’s Treasury Department. As a Policy Advisor, Jeff structured and led Treasury’s investments in and support for the financial sector and advised senior Obama Administration officials on issues related to financial stability. Following his time at Treasury, Jeff joined the Carlyle Group in the firm’s U.S. Equity Opportunity Fund. 

Jeff graduated with a B.A. in Public Policy from Stanford University and received his M.B.A. from Harvard Business School with honors.

As a young child, Jeff Zuttah was diagnosed with sickle cell disease. Despite enduring repeated hospitalizations and painful sickle cell crises – Jeff was determined to overcome every challenge he faced. With the support of his family, including his mother—a pediatric nurse—friends and devoted medical team, Jeff has gone on to do extraordinary things, inspired by the limitations people set on him because of his condition. He could not have done it alone. This is his family’s story: https://www.youtube.com/watch?v=Vw2pFNWSa1s 

Dorothea Douglas, MD
Nemours Childrens Hospital
(Orlando)
University of Central Florida College of Medicine

Dereck Davis, MD
University of Mississippi Medical Center