A Huge Thank You to Our 2019 SCAY Awards Judging Panel
2019 SCAY Award Winners
Tonya Prince is truly a shining example of a sickle cell advocate. She has blazed trails in Texas for sickle cell patients, creating the Houston Sickle Cell Collaborative, the first of its kind in the city of Houston. Her organization was the first and only community-based organization in the area with hospital admitting privileges, allowing for proper follow-up care post-discharge for sickle cell patients. Ms. Prince began her advocacy work with almost no start-up funds; all she had was her vision, and that was enough. Her hard work paid off, and today, her programming supports the sickle cell community through various events. Every year, the organization hosts multiple events for sickle cell warriors such as an annual back to school bash, an awareness walk for sickle cell, and a Skullies & Scarves giveaway during the wintertime.
However, Ms. Prince’s work does not stop there. She states that her top sickle cell accomplishment was filing four legislative bills with the Texas House of Representatives, two of which passed unanimously. The first bill, “HB2576,” was an opioid exemption bill for sickle cell patients in Texas. The second bill, “HB3405,” created a sickle cell task force in Texas to fund and increase awareness of the disease. She has lobbied the Texas government in support of sickle cell patients with patience and persistence, and her work has not gone unnoticed; she has been congressionally recognized three times and has received Mayoral Proclamations for a Houston Sickle Cell Awareness Day.
Ms. Prince attributes her successes to God: “The valuable lesson I learned along this journey is that when God gives you vision and you are obedient to that which was called upon you to do, he sends provision.” She hopes that she can renew hope and healing in sickle cell patients, whether it’s through a simple hospital visit, phone call, or check in. Tonya Prince is a true partner of the sickle cell community, and Sickle Cell 101 is happy to recognize her as the winner of the 2019 SCAY Awards National Advocate Winner.
Congratulate Tonya Prince!
At the age of two, Arrey was diagnosed with sickle cell disease. From then on, it shaped her life, but she did not let it stop her. She graduated with a double honors degree in Women and Gender Studies and Sociology and Anthropology with an additional diploma in Development Studies and Human Resource Management. Graduating from college was not an easy journey. Arrey lost most of her hearing before she could complete primary school, and with no provisions in place for people with disabilities, she struggled through school. Still, she persevered with the support and encouragement from family, friends, and teachers.
The past four years, Arrey has been motivated by her personal battles with sickle cell disease to become an advocate in Cameroon and the larger community. Her platforms include her blog, her Facebook and other social media, and her community workshops. Her blog, joy2endure, was a finalist in the Health Unlocked Health Bloggers Aware and was nominated for best blog of the year. Arrey’s goal in writing on her blog is to demystify sickle cell and increase awareness. Through her online advocacy, she was also the winner of the Digital Summit SDG 3 2018 Award that recognizes those who use social media and technology to promote and educate people on health. She was recently featured on the BBC program #TalkItOut where she addressed the stigma and discrimination that many people living with sickle cell and their families go through.
On top of her online advocacy, Arrey organizes workshops and campaigns year-round. She states, “It has been thrilling to see so many gradually changing their perceptions about sickle cell over the years and who now support me in my quest to break the silence, stigma, taboos, and misconceptions around sickle cell. I am more than grateful for that support.” Her work in her community has opened up conversations allowing more leaders and policy-makers to become involved in making life easier for those with sickle cell,
By educating others and opening up discussions both online and in-person, Arrey, a sickle cell warrior herself, is a shining example of an advocate for sickle cell disease. She continues to work toward debunking myths and breaking the silence around sickle cell disease. She hopes to help others understand that with some care, love, and support, those living with sickle cell can live positive and impactful lives and discover their full potential.
Sickle Cell 101 is happy to present Arrey-Echi Agbor-Ndakaw this year’s SCAY International Advocate Award for her work for sickle cell in Cameroon.
Congratulate Arrey-Echi Agbor-Ndakwe!
Georgene 'Gina' Glass
When Georgene Glass learned that her daughter was diagnosed with sickle cell disease, she began a journey of advocacy that is inspiring to all. Even after losing her job due to taking care of her child, she never let the setback hinder her from her path of helping others. Ms. Glass fully immersed herself in the few established community events at the time by providing support and information to other parents through a support group run by community leaders. However, this was not enough for her. She knew that the community needed more resources for sickle cell patients and advocates, and she knew that if anyone could do it, it was her.
With little to no resources, Ms. Glass started her own foundation focused on one mission — “Make Sickle Cell Popular.” Her organization has achieved this goal by highlighting sickle cell in the community newspapers, encouraging signups for bone marrow donation, participating in the first ever Dr. Charles Drew blood drive in Nevada, and lobbying Washington D.C. to gain more funding for sickle cell. She has successfully implemented an annual Sickle Cell community walk, something that had not been seen in Nevada in over five years, bringing together the community, government officials, leaders, and advocates for the cause.
Her most recent accomplishment was a Warrior Drive, an event she coordinated in order to encourage her community and to provide a supportive space for individuals and families affected by sickle cell disease. According to Mr. JD Whitehead, photographer for the Warrior Drive, “The amount of heart and effort that Georgene puts in every day is something beautiful to see… In such a short time, she has been able to pull people impacted by sickle cell together.”
Ms. Glass continues to fight for her community by becoming involved in the legislative process. She was integral in passing the first sickle cell disease bill in Nevada, and she is a participant in the creation of Nevada’s Sickle Cell State Action Plan. From her lobbying to her organization, her achievements have been taken notice of by her community. She has been named one of Las Vegas’ Top 100 Women of Influence, Umoja Festival Winner, ambassador for Emerge Woman Magazine, and Rare Disease Team Lead 2019.
Through her passion for sickle cell advocacy and her devotion to her daughter, a sickle cell warrior, Georgene Glass is truly a community advocate. She has accomplished so much through her organization which is only a year old. We are excited to see what this year’s SCAY Community Advocate Award winner will continue to accomplish in the future.
Congratulate Georgene ‘Gina’ Glass!
2019 SCAY Awards Judging Panel
ANDRE HARRIS, CHW
André Marcel Harris is a Bachelor of Social Work (BSW) student and a Ronald E. McNair Scholar at Fayetteville State University in Fayetteville, North Carolina. Upon completion of his BSW, Mr. Harris aspires to pursue a Master of Social Work/Public Health and a PhD in Medical Sociology. Currently, he is a Health Equity Fellow for the Department of Health and Human Services Office of Minority Health Youth Health Equity Model of Practice (YHEMOP) at the Foundation for Sickle Cell Disease Research. Mr. Harris is also a certified Sickle Cell Counselor/Educator, Community Health Worker and National Patient Advocate through the Sickle Cell Disease Association of America, Inc. (SCDAA), a Patient Centered Peer Facilitator trained by the Patient Centered Outcomes Research Institute (PCORI), and a Hemoglobinopathy Counselor certified with Cincinnati Comprehensive Sickle Cell Center. He has dedicated his life to working for the cause of Sickle Cell Disease recognizing the gap in research, funding, education and awareness of the most common genetic blood disorder in the United States.
ASHLEY VALENTINE, MRes
Ashley is a Co-Founder of Sick Cells and the youngest sibling of her family. Her older brother and Co-Founder of Sick Cells, Marqus Valentine, has sickle cell anemia, Hgb ss. Growing up, Ashley spent much of her childhood charming hospital playroom attendants while Marqus was frequently hospitalized for pain crises, fever, and multiple complications from SCD. While in high school, Ashley first understood the disparities for SCD when her brother developed seizures and as a result, lost his motor skills. The family’s insurance would not cover Marqus’ rehabilitation, because sickle cell is an unknown chronic disease. The insurance company told the Valentine family that Marqus was considered “not disabled enough” for medical help. Ashley and the family worked together to rehab Marqus at home. They taught him how to hold a fork again and redeveloped his ability to speak, leading to a successful recovery. This event solidified the drive in Ashley to educate others about SCD and advocate on behalf of her family and the sickle cell community.
As an adult, Ashley completed her Master’s in Research Methods from the University Of Aberdeen, Scotland. She focused on disparities in healthcare for people with SCD in London. After graduate school, she worked with University of Illinois in Chicago’s sickle cell program and later transitioned into policy work in Washington, DC. While working as a policy researcher, Ashley successfully wrote sickle cell disease into part of an $8 million Centers for Medicaid and Medicare Services (CMS) funding opportunity to address disparities for adults in the emergency department. Ashley currently splits her time between working as a sickle cell clinical researcher and building the Sick Cells organization.
Rabi Maidunama has sickle cell disease type SS and has lost a sister to the disease. She founded The Maidunama Sickle Cell Foundation (MAISCEF), a nonprofit organization based in Abuja, Nigeria. The organization provides a wide-range of services to sickle cell disease patients in Nigeria, which include community outreach and educational events. Under Rabi’s leadership, MAISCEF hosts a solidarity walk for World Sickle Cell Day and organizes sickle cell beauty pageants. Rabi has brought important sickle cell causes to the attention of politicians, governors and members of the Nigerian parliament. It is her life’s mission to eradicate the incidence of SCD in the Nigerian society.
Teonna Woolford was born and raised in Baltimore Maryland. She has Sickle Cell Anemia SS, but while sickle cell has been a huge part of Teonna’s life, she does her best not to let sickle cell define who she is. She credits God and gives him all the glory for her achievements and accomplishments. Teonna strives to not only educate people in the sickle cell community on the facts of sickle cell disease, but she also works to spread the word about the emotional toll sickle cell can have on people with the disease and their families. She speaks about sickle cell disease in a transparent, open, and honest way, and she has been successful in carrying her message to schools and churches. She has shared her personal story and the challenges facing the sickle cell community to the likes of Michelle Obama, Dr. Ben Carson, and members of congress such as civil rights leader and humanitarian Congressman John Lewis. Along with advocacy, Teonna is very passionate about community service. She also enjoys reading, writing, watching movies, keeping up with current events around the world, cooking, spending time with her family, and staying active in her church.
WANDA WHITTEN-SHURNEY, MD
Dr. Wanda-Whitten Shurney completed her undergraduate work at the University of Michigan and attended medical school at Howard University. She received her pediatric residency training at Children’s Hospital of Michigan and spent a year in their Hematology Oncology Fellowship. Currently, she is the CEO and Medical Director for the Sickle Cell Disease Association of America (SCDAA) Michigan Chapter which serves as the coordinating center for the Michigan Newborn Hemoglobinopathy Screening program. She is also a pediatrician at the Comprehensive Sickle Cell Clinic at Children’s Hospital of Michigan where she has provided compassionate outpatient care for children with sickle cell disease for the past 30 years. She currently serves on the NHLBI Sickle Cell Research Advisory Committee and has a seat on the National SCDAA Board. Dr. Whitten-Shurney has a particular interest in patient education and providing coping strategies for families.