Sicklepedia | SCD Studies | Podcast | En Español (próximamente)
CONGRATULATIONS TO THE
2020 SCAY AWARDS RECIPIENTS
Prizes
To commemorate our 7th Annual SCAY Award Recipients, Sickle Cell 101 is presenting with:
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A Moon Award Plaque
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$500 Cash Prize
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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
Ramon Reed
Celebrity Guest Judge
2019 SCAY Award Winners
Sharifu K. Tusuubira
International Advocate of the Year
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“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.
Isaac Okello
Sickle Cell Community Advocate of the Year
2020 SCAY Awards Judging Panel
RAMON REED
A native of Charlotte, North Carolina, Ramon Reed began acting at the age of five in community plays through his school, church and with Porch Productions. In 2015, his starring role as Donkey in a North Carolina Children's Theater summer camp production of "Shrek Jr." sparked a more serious desire and love for acting. In 2017, he decided to give acting a real shot and auditioned for Disney’s "The Lion King" musical. He landed the role as Young Simba and toured with their North American Rafiki Company. He performed in 13 cities for 10 months and appeared in four out of eight shows each week. While on tour, Reed was asked to join the award-winning musical on Broadway, where he performed as Young Simba for three more months before he landed his role on "Just Roll With It."
Reed stars as Owen Blatt, an accomplished student who thrives on detailed schedules and being highly-organized, in Disney Channel's "Just Roll With It." The first-of-its-kind series is a hybrid of a scripted family comedy and an improvisational comedy in which the studio audience members vote on the outcome of certain scenes.
When Reed is not on stage or in front of a camera, he can be found singing, inspiring others, having Nerf wars, playing board games, go-karting, shooting basketball or playing with his baby sister, Skylar. He also loves spending time sharing jokes with his family and friends, whether he is at home or exploring the city.
Reed is a Sickle Cell Anemia warrior and is an advocate for those who live with the disorder. Determined not to let his condition define him, Reed wants to inspire others to continue to pursue their dreams – no matter what life throws their way.
Reed currently resides in Los Angeles with his family.
ADA GONZALEZ
Ada lives with sickle cell disease type SS.
In 1990, her doctor at the time, was studying under a researcher in Montefiore who was studying hydroxyurea in sickle cell patients. Although the study was not complete, they decided to let start the therapy. Once she started, for the first time in her life, she was out of the hospital for more than three months; crises were not as severe as they once were.
Ada has been able to work steadily without interruption for the past 28 years. She is a medical assistant by trade and has been an office manager to the cardiology practice for 9 years and in the field for 24 years. She has been married to her wonderful husband for over 12 years, and her family also includes two beautiful and talented nieces, two handsome step-grandsons and 1 beautiful step-granddaughter.
Her family is very supportive family, starting from her mother, sister, aunts and cousins, and her extended family through marriage. She also has the a Carolina dog/Shepherd mix, who she adores.
Ada volunteers for local sickle cell organizations and provides educational content in for spanish-speaking sickle cell population.
AHMAR ZAIDI, MD
Ahmar Urooj Zaidi is assistant professor of pediatrics at Children’s Hospital of Michigan. He holds board certification in pediatrics from American Board of Pediatrics, 2014.
His clinical interests include sickle cell disease, benign hematology, and chronic and acquired haemolytic anemias. His research interests include novel therapies in sickle cell disease, patient reported outcomes and red blood cell disorders.
Dr Zaidi is also associated with North Star Reach as camp physician for sickle cell camp week.
He got his medical degree from Medical University of the Americas. He completed his residency in pediatrics from William Beaumont Hospital followed by fellowship in pediatric hematology/oncology from Children’s Hospital of Michigan.
ARREY-ECHI AGBOR-NDAKAW
Arrey-Echi Agbor-Ndakaw is the 2019 International Sickle Cell Advocate of the Year.
has Sickle Cell SS. She lost her hearing at a young age. Depsite that, she didn't let this and her health challenges tie her down, thanks to the ever present support of her family, the ever growing support system and her God. A graduate from the University of Buea, Cameroon, she's a passionate advocate of sickle cell. she understands invisible pain, stigma, misconceptions, the NEED to tell our own stories and the power of HER VOICE in demystifying Sickle Cell. Her advocacy includes her yearly #BreakTheSilence, BeASickleCellVoice colour awareness campaign carried out in June aimed at using colour to debunk the myths and change perceptions around Sickle Cell through the use of Social Media. Her blog, joy2endure.com was a finalist of Health Unlocked Health Blogger of the year 2017 award and she's a two times Story Awardee of World Pulse including, First ever winner of World Pulse Spirit Awards in the Encourager Category 2020, amongst others. Through her organisation Joy2Endure Foundation, she carries out a lot of out reach activities especially to schools and the community at large. Her dream is to grow a foundation that would be at the fore front of Sickle Cell awareness and care in Cameroon, Sub Sahara Africa, making it a strong global voice in the fight on Sickle Cell issues . She loves reading, writing, cooking and mentoring other warriors and is also passionate about Disability issues.
TONYA PRINCE
Tonya Prince is the 2019 National Sickle Cell Advocate of the Year.
Prince is the Founder and President of Sickle Cell Association of Houston. Tonya is responsible for all programming and administrative functionality for the advancement of the Sickle Cell Association of Houston assuring all Houstonians who suffer from Sickle Cell Disease has a voice in this city and that their needs are being met through utilizing a more multi-disciplinary approach.
Tonya Prince is a native Houstonian that understands first hand, the many challenges that a person with Sickle Cell Disease can be faced with and encounter on a daily basis. It is the overarching goal of the association, to aide in removing barriers so that people with sickel cell disease are living beyond limits! She attended Texas Southern University and has over 15 years of experience in the healthcare industry.
She has served on various Joint Operations Committees for some of the largest healthcare systems in the state of Texas. She has also served as Chairperson for the Texas Health Steps Coalition of Dallas and has been instrumental in health plan processes and policies. She has extensive experience in government programs, community outreach and connections, and has strong alliances with the medical community. Mrs. Prince presently serves as a member of The National Association of Professional Women’s leadership team overseeing the central region where she was acknowledged as Woman of the Year.
As a mother of a daughter with Sickle Cell Disease, it is her unwavering passion, commitment, and her desire to “be” the change she wants to see for the Sickle Cell Community. Through various programming efforts, services and supports, it is the mission of the Sickle Cell Association of Houston to revolutionize the way the world view our sicklers; through education, quality healthcare, appropriate services and supports, and research.
2020 SCAY Awards Winner Interviews
Sharifu Tusuubira
Why do you advocate for sickle cell?
My name "Tusuubira" means "we hope". Over the years, I have always been keen on reaching out to people living with sickle cell as a way of inspiring and strengthening their hope and belief. I understand the stigma associated with sickle cell, and this is one of the reasons why my life-long mission and target is to continue to play significant roles in shaping the world and the people living with sickle cell positively. We all need someone to lean on or look up to, and it is my passion and dream to be functioning this way.
What are your future advocacy plans?
My plan is to continue the sickle cell advocacy, build new relationships across the globe in order to develop more collaborative initiatives, and promote technology transfer in the sickle cell space. I look forward to mentoring more youth, especially those living with sickle cell by helping them realize, develop, and create sustainable impactful youth-led initiatives. I also want to continue being a catalyst on issues relating to carving a world where persons living with sickle cell will have access to resources that will help them realize their dream and aspirations. Above all, I look forward to becoming part of a global network of sickle cell advocates working to improve the quality of life of persons living with sickle cell.
Is there anything else you would like to share with the sickle cell community?
As Solange Nicole put it “My burden is my purpose. Without it, I wouldn’t be”; 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.
Coretta Jenerette, Ph.D., RN, AOCN, CNE, FAAN
Why do you advocate for sickle cell?
I am a Ph.D. prepared academic nurse scientist. The most important part of my training is the foundation I have in nursing. Nurses are ranked the most trust profession year after year, yet they often contribute to poor outcomes- especially during care-seeking for individuals with sickle cell. I advocate because I know the majority of individuals with sickle cell enter the healthcare system because they need to do so. Unfortunately, they are then profiled, labeled, and suffer negative outcomes. My goal is to help individuals and families navigate the health care system and improve their health outcomes. Additionally, as an educator, I strive to use every opportunity to educate future health care providers, especially nurses, to provide appropriate, empathetic, evidence-based care to individuals with sickle cell. I advocate because all of us should do our part to be and cultivate social justice advocates.
What are your future advocacy plans?
The most important thing I can continue to do to support the sickle cell community is listening to their voices. When I listen, my contributions will remain patient-centered and, therefore, meaningful to individuals and families living with sickle cell. I will continue to make community engagement a priority and integrate awareness and education about sickle cell where ever and whenever I can.
Is there anything else you would like to share with the sickle cell community?
It is with great humility that I accept this award and acknowledge that the lives of individuals and families living with sickle cell matter. I will continue to be an advocate and an ally as long as the sickle cell community has needs.
Dr. Oluwatosin Adesoye
Why do you advocate for sickle cell?
I am sickle cell, sickle cell is me. As much as I am a medical doctor, I live with sickle cell disease. So firstly I'm motivated by my pain, my sickle cell disease complications, my strength, I'm motivated to teach and create more sickle cell awareness due to the level of ignorance about sickle cell disease especially in Africa. I've seen parents blame their children for having sickle cell disorder and falling ill many times, a parent got his very sick child living with sickle cell disorder discharged against medical advice after blaming her for all their woes not listening to any one. I'm motivated to speak up when I continually see how my country Nigeria which is the country with the highest incidence of sickle cell disease in the world neglects people living with sickle cell disease and care less about what happens to them. I'm motivated to do something because I've realised one of the major causes of increased rate of early mortality in Africans living with sickle cell disease is poverty. Sickle cell disease is very virulent, yet one of the most under researched diseases, this motivates me to want to research more about sickle cell disease.
What are your future advocacy plans?
I recently founded SickleLive foundation to help sickle cell warriors more, i want to increase awareness and education about sickle cell disease especially educating warriors more about their health and reduce the rate of stigmatization. As far as awareness is concerned, I'm hoping we will be able to speak loud enough so that the government hears us, hoping to collaborate with the government, other NGOs to increase sensitization about sickle cell disorder and importance of genotype compatibility. we need implementation and financing of newborn screening in hospitals in sub Saharan Africa, we need health insurance schemes or free health cares for warriors, we need government jobs for sickle cell warriors so they can get medical leave when they are sick and get their jobs back when they recover, this will help reduce the rate of unemployment among sickle cell warriors because they lose their jobs easily due to their bad health. I want more attention to be paid to psychosocial impact of sickle cell disease and ways to prevent and properly manage them. I want to fight for quality medical care for people living with SCD, we deserve to have specialized sickle cell clinics in all states in Nigeria for example. My first research on sickle cell disease is ongoing and I hope to carry out many more researches on sickle cell disease, many sickle cell warriors need to be empowered educationally, financially, through vocational training etc. Hopefully we can achieve all this.
Is there anything else you would like to share with the sickle cell community?
Every sickle cell warrior inspires me to keep fighting keep the hope alive, and never give up no matter the complications you are going through. Do not allow anyone make you feel any less of who you are because you are living with sickle cell disorder. Pay attention to your health, to your care, to your body and to it's individuality.
Isaac Okello
Why do you advocate for sickle cell?
There is sickle cell knowledge gap in my community that drives me to do more awareness and advocacy. We need to address the misconception about the disease and to seek equal care to sickle cell warriors.
What are your future advocacy plans?
I plan to address the challenges of stigmas in high schools and communities in Uganda.
Is there anything else you would like to share with the sickle cell community?
Sickle cell disease should be given more attention to help mitigate the high prevalence. We have lost our siblings to SCD because of ignorance and care. Let's care for sickle cell warriors.
Congratulations to the Runner-ups!
International
Lora Ruth Wogu, Modupe Juliana Babawale
National
Kemba Gosier, Princess Sherika
Healthcare Provider
Dr. Joneclever Patrick, Angela Mull
Community
Mason Douglas
