To commemorate our 7th Annual SCAY Award Recipients, Sickle Cell 101 is presenting with:
A Moon Award Plaque
$500 Cash Prize
Features on Sickle Cell 101
THANK YOU TO OUR SPONSOR!
Emmaus Life Science is pleased and honored to partner with Sickle Cell 101 for the 7th Annual SCAY Awards. We applaud Sickle Cell 101 and proudly stand by their side as they bring awareness and education for patient's and their families.
A Huge Thank You to Our
2020 SCAY Awards Judging Panel
2019 SCAY Award Winners
Sharifu K. Tusuubira
International Advocate of the Year
“Living with sickle cell should not define us. It should, however, help us utilize our inner strength to realize that boundaries are only within the mind, not the body." –Sharifu Tusuubira
With the last name translating directly to “we hope,” Sharifu Tusuubira is an advocate that truly brings hope to the international sickle cell community. Mr. Tusuubira is motivated by his own experiences living with sickle cell disease in Uganda to be an advocate for sickle cell warriors in both his community and internationally. He is currently pursuing his Ph.D. in population genetics at the University of Kansas. Before that, he served as the first Executive Director of the Uganda Sickle Cell Rescue Foundation (USCRF), a nonprofit organization working to promote awareness of SCD in Uganda. Through his work with the Ugandan sickle cell community, Tusuubira has directly served over 60,150 people, set up 10 support networks, and registered 20,153 sickle cell warriors across Uganda.
One of Mr. Tusuubira’s most notable accomplishments is establishing the first community sickle cell screening initiative in Uganda in 2014 where over 500 people were screened. Since then, screening has been incorporated into all of the sickle cell awareness activities at Uganda Sickle Cell Rescue Foundation and has also been adopted by the Ugandan Ministry of Health. Mr. Tusuubira’s initiative has directly impacted his community, enabling over 100,000 people across Uganda to access sickle cell screening tests even within the confines of their villages.
In addition to his screening initiatives, Mr. Tusuubira has also been working on two books through the Sickle Cell Book Project in partnership with multiple award-winning Ghanaian author, Ruby Goka. The first book, targeted towards young adults, strives to demystify SCD to reduce the associated stigma and discrimination that young people living with SCD face. The second book aims to explain the basics of the disease to younger children in the format of a picture book. These books are ready for publication and distribution across Uganda, so make sure to be on the lookout for them soon!
Mr. Tusuubira’s work for the sickle cell community of Uganda is a shining example of how advocacy driven by motivation, purpose, and perseverance can positively affect thousands. His hard work has not gone unnoticed; Mr. Tusuubira is the proud recipient of the 2017 Mandela Washington Fellowship award, the 2018 Clarke International University award for community outreach and nominee of the 2020 Leader of the Year award at the University of Kansas.
Mr. Tusuubira puts it best: “We all need someone to lean on or look up to, and it is my passion and dream to be functioning in this way.” He hopes to continue his advocacy work across the globe to foster international collaboration and technology transfer in the sickle cell space. He also looks forward to mentoring more youth in the sickle cell community to establish sustainable, impactful youth-led initiatives. We are honored to recognize Mr. Tusuubira as the 2020 SCAY Awards International Advocate Winner.
Congratulations, Sharifu Tussubira! Read Sharifu Tussubira's interview.
“I advocate because all of us should do our part to be and cultivate social justice advocates.”
– Coretta Jenerette, Ph.D., RN, AOCN, CNE, FAAN
As a Ph.D. prepared academic nurse scientist and Professor and Associate Dean for Diversity, Equity, and Inclusivity at a College of Nursing, Dr. Coretta Jenerette views the struggles that sickle cell patients face in healthcare from a unique perspective. Dr. Jenerette’s 25 year-long history of advocacy for the sickle cell community comes from her deep understanding of how sickle cell patients are profiled and labeled in the healthcare system and how nurses and other healthcare providers can be educated to do better. Her advocacy is centered around educating both sides of the equation; she strives to help individuals and families navigate the healthcare system and improve their health outcomes while also educating healthcare providers in providing appropriate, empathetic, and evidence-based care to individuals with sickle cell disease.
As part of her Macy Faculty Scholar’s Project, Dr. Jenerette works with both students and faculty in healthcare to raise awareness of the social determinants of health, health equity, and implicit bias. On one end of the spectrum, she has worked with over 100 senior undergraduate nursing students to complete a project centered on empathy and pain management. On the other end of the spectrum, she has worked with faculty in her Ph.D. program to focus an entire qualitative research course on adults with SCD. Both accomplishments allowed students and faculty in her community to learn about ethics and social justice advocacy within the topic of healthcare in the sickle cell community.
Dr. Jenerette’s work has not only impacted her program community, but also the larger community beyond it. She developed and published the Theory of Self-Care Management for Sickle Cell Disease and the Sickle Cell Disease Health-Related Stigma Scale. The scale is now used in at least three countries outside of the US including Brazil. In her 25 years of advocacy for the sickle cell community, Dr. Jenerette has served on boards including as Treasurer and former President of the International Association of Sickle Cell Nurses and Professional Associates (IASCNAPA), provided talks for support groups, and dedicated her time and resources to improve the lives of those living with SCD.
In the future, Dr. Jenerette hopes to continue listening to the needs of the sickle cell community and centering her advocacy around what her patients, individuals, and families need. She wants to make community engagement a priority, continuing to integrate awareness and education about sickle cell into her community and her own life wherever and whenever she can. We are honored to announce her as the 2020 SCAY Awards National Advocate Winner.
Congratulations, Dr. Coretta Jenerette! Read Dr. Coretta Jenerette's interview.
Coretta Jenerette, Ph.D., RN, AOCN, CNE, FAAN
National Advocate of the Year
“I am inspired by my pain and my complications… I am inspired by the pain of every sickle cell warrior. I am inspired by every warrior living beyond their health limitations.”
–Dr. Oluwatosin Adesoye
Dr. Oluwatosin Adesoye wears many hats: she is a sickle cell warrior, a sickle cell advocate, and a medical doctor who works in the state specialist hospital of Asubiaro, Osogbo. Her advocacy work is inspired by both her own pain and complications associated with SCD, but also by the pain that all sickle cell warriors live through. Her passion is educating patients with sickle cell on how to live their healthiest lives, and through her work, she has become a beacon of light to both sickle cell warriors and healthcare providers.
Dr. Adesoye’s advocacy work centers around social media. Her “Sickle Cell Celeb” Facebook group has over 2,700 members who are able to access not only health education but also a forum in which they can share their struggles and victories with others who will understand their pain. Dr. Adesoye uses this platform to give informed medical advice and to help sickle cell warriors find fulfillment through online connections. She has also created the Dr. Teeeee page for SCD education, publishing numerous educational articles on SCD with some posts garnering over 100 shares and comments.
In addition to her online advocacy work, Dr. Adesoye recently founded a nonprofit organization called SickleLive Foundation. The purpose of the foundation is to conduct ongoing research on sickle cell disease. The organization also supports the SCD community financially; it has partnered with a group of schools in her community to subsidize tuition fees for twenty primary and secondary school students with sickle cell disease, and it has also been able to provide free routine drugs for sickle cell warriors. Through this new foundation, Dr. Adesoye has provided medical, psychological, and financial assistance to many people living with SCD in her community.
Dr. Adesoye cites the neglect of sickle cell warriors by the Nigerian government (despite the country having the highest incidence of the disease) as a motivating factor for her advocacy work. She strives to raise awareness and reduce ignorance surrounding sickle cell disease, and she does all of this on top of working as a doctor in her state hospital of Osogbo. She is a shining example of a healthcare provider and an advocate, and we are proud to announce that she is the 2020 SCAY Awards Healthcare Provider Advocate Winner.
Congratulations, Dr. Oluwatosin Adesoye! Read Dr. Oluwatosin Adesoye's interview.
Dr. Oluwatosin Adesoye
Healthcare Provider Advocate of the Year
2019 SCAY Awards Judging Panel
“I do this because I have a passion for it, a privilege to do it, not to be paid, and the little that makes a difference in the lives of those with SCD." –Isaac Okello
Isaac Okello, in his sickle cell advocacy work within the last four years, has restored hope and faith in the sickle cell community in East Africa. His empathetic spirit and passion for advocacy has allowed him to make a social impact through sickle cell awareness and community support. Mr. Okello serves as the Executive Director of Raising Hope International Friends, a sickle cell foundation in Uganda. Through this foundation, he has launched countless initiatives for the surrounding sickle cell community.
Mr. Okello’s foundation focuses on education, community support, and awareness. Notable events include the Sickle Cell Awareness Soccer Gala in 2018 which attracted over 2,000 people and the Sickle Cell Marathon in 2020 that attracted thousands of runners and the support of over 10 corporations. Through these events, Mr. Okello hopes to raise awareness of the importance of finding an affordable cure for those suffering from SCD in Uganda. He also hopes to inspire the community to come together and support each other through advocacy and awareness.
On top of these accomplishments, Mr. Okello’s work has been integral in raising awareness of genetic screening and counseling in his community. In 2019, he launched the Sickle Cell Clinic in order to provide proper care and genetic counseling for individuals with SCD. He has also raised funds to subsidize medications for sickle cell warriors in his community and trained caretakers on the importance of home care management of SCD.
In the future, Mr. Okello hopes to fight the stigma surrounding sickle cell disease in high school in Uganda. He continues to advocate for sickle cell disease to be declared a public health concern by WHO and for a cure to be found. Finally, his goal is to continue restoring hope in the SCD community and putting smiles on the faces of every sickle cell warrior. Mr. Okello is currently pursuing his bachelor's degree in Public Health. He is a true inspiration, so much so that those he works with calling him “Isaac Sickle Cell.” We are happy to announce that Mr. Okello’s work for his community has earned him the title of the 2020 SCAY Awards Community Advocate Winner.
Congratulations, Isaac Okello! Read Isaac Okello's interview.
Sickle Cell Community Advocate of the Year
2020 SCAY Awards Judging Panel
2020 SCAY Awards Winner Interviews
Congratulations to the Runner-ups!
Lora Ruth Wogu, Modupe Juliana Babawale
Kemba Gosier, Princess Sherika
Dr. Joneclever Patrick, Angela Mull