SICKLE CELL ADVOCATE OF THE YEAR (SCAY) AWARDS
Sickle Cell Excellence Awards
To commemorate our 2019 SCAY Award Recipients, Sickle Cell 101 is presenting them with the following:
A Moon Award Plaque
$500 Cash Prize
Features on Sickle Cell 101
A Huge Thank You to Our 2019 SCAY Awards Judging Panel
2019 SCAY Award Winners
National Advocate of the Year
“The sickle cell community motivates me. If I could say one thing to the entire community, it would
be that it is them who give me life, happiness, and purpose. I think that I found myself when I
decided to dedicate my work to them.” –Tonya Prince
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!
International Advocate of the Year
“In the past four years, I have used my personal battles with sickle cell to break the silence, stigma, and taboo around sickle cell to help raise awareness and change the narrative and perceptions
about people living with the disease.” –Arrey-Echi Agbor Ndakaw
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
Community Advocate of the Year
“Georgene exemplifies what it means to turn an obstacle into both a stepping stone and a beam of hope for those facing similar struggles. She chose to use what is viewed as a burden by many as a means to inform, educate, and advocate for her daughter… and others impacted by sickle cell.”
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!