9th Annual

Sickle Cell Advocates of the Year (SCAY) Awards

Learn more about our 2022 finalists and their work within the sickle cell community.

The voting period for 2022 SCAY Awards finalists begins now and ends on January 23, 2023. Winners in each category will be announced on January 25, 2023.

Finalist Candidates

Sickle Cell Advocate of the Year

A leader within the sickle cell community that demonstrates their commitment to serving, connecting, educating, empowering, and/or inspiring the sickle cell community through their contributions and achievements.

Youth Sickle Cell Advocate of the Year

A young leader (<18 years) within the sickle cell community that demonstrates their commitment to serving, connecting, educating, empowering, and/or inspiring the sickle cell community through their contributions and achievements.

Digital Sickle Cell Advocate of the Year

A leader within the digital space that demonstrates their commitment to serving, connecting, educating, empowering, and/or inspiring the digital sickle cell community through their contributions and achievements.

Sickle Cell HCP Advocate of the Year

A healthcare professional (HCP) or medical student demonstrating true allyship in clinical care and treatment for sickle cell by displaying excellence in engaging with patients and their loved ones to optimize care and treatment for sickle cell.

Finalist Profiles

Anne Welsh

London, UK

"My sickle cell pain motivates me to work hard and make a difference in the community. I use my platform for global awareness of sickle cell. We are always silent; it is our time to shine and let the world know our worth."


Anne is a sickle cell warrior and advocate, wife, and mother of a son and daughter. She is an entrepreneur and Founder/CEO of Painless Universal. She is also an internationally recognized author and motivational speaker, connecting with people on how to deal with physical and mental pain on an individual basis, and working closely with corporate decision-makers.

Anne’s academic credentials include a Bachelor of Arts in Accounting and Finance from Hertfordshire University in the UK. She is also a graduate of London’s Cass Business School with an MSc in Investment Management.

Anne is a member of Cass’s Executive Board of the Global Women’s Leadership Programme, which seeks to inspire, equip and connect women to become thriving leaders. She is a global leader in sickle cell awareness and former Chairperson of Sickle Cell Society UK. Anne is a leading international speaker and best-selling author of her memoir “Painless: Living with Pain Finding Joy,” endorsed by Dr. Tedros Adhanom Ghebreyesus – Director General of the World Health Organization.


Having lived with pain all her life, Anne is an expert in improving the well-being and performance of people and organizations. She launched Painless Universal as the platform to support these endeavors after the tremendous response to her bestselling book, "Painless – Living with Pain, Finding Joy." Through her book, her organization is making a significant social impact as it is dedicated to improving sickle cell awareness and sharing solutions for the quality of life that can improve for people with the disease or, for that matter, people with chronic illnesses.

Anne hosts and produces a show called Painless Universal. She interviews people going through pain, such as those living with sickle cell disease, and enables them to share their journey and story, aiming to reach and empower people going through similar pain. 

As a former Chairperson of the charity Sickle Cell Society UK, Anne supported developing and implementing policies to improve the quality of life of affected individuals.

From dealing with the World Health Organization, United Nations, and various governments from the UK, Bahrain, Saudi, USA, African, and others, Anne uses her voice to make leaders understand their pain. Through her work, sickle cell is now included in the U.K. nursing program, and an All-Party Parliamentary Group was formed. Bahrain worked with international organizations to bring awareness to their great work. During the African Union head of states meeting, sickle cell was discussed. The global pharmaceutical worked with First Ladies to listen to their concerns about the disorder.

Author of Pain-Less

Brenda Green

South Carolina, USA

"Brenda is an ear for young caregivers even though she works full-time. She remembers how she felt alone during the early years of her son’s life, and she doesn’t want any other family to feel like they are on their own on this sickle cell journey."


Brenda is a sickle cell advocate, caregiver, and mother of a son living with sickle cell disease. She founded a non-profit, The B Strong Group, in honor of her son in spreading sickle cell awareness when she realized the dire need in her community. She also noticed gaps in attention and care for sickle cell warriors and their families. 

Brenda began making regular donations to children and adult sickle cell clinics in their honor, supporting families upon their request during admittance, creating virtual support group meetings, developing a strong blood donation campaign in honor of sickle cell warriors, and partnering with other organizations in the community to spread awareness and education.

Brenda leads The B Strong Group in their partnership with the Sickle Cell Community Consortium, served on the Prisma Health Children’s Hospital Midlands Children & Family Advisory Council, serves on the South Carolina Sickle Cell Task Force, and the American Red Cross SC Sickle Cell Task Force. She has received her Sickle Cell Counselor & Education Certification, serves as a Health Coach with the CaRISMA Study through the University of Pittsburgh. 


Brenda has led multiple projects that support those living with sickle cell disease and their caregivers. The B Strong Group’s partnership with the American Red Cross has generated an increase in blood drives in her community as hosted by their organization and influenced others to do the same. 

Brenda hosts The B Strong Group Tuesday Chats, a virtual discussion of important topics for those living with sickle cell disease. Guests include sickle cell warriors and their caregivers, physicians, patient advocates, leaders of other organizations, and local leaders and partners. 

Brenda secured a grant to support a series of caregiver workshops through a project named Project Empower. Brenda identified the need for caregivers, including young adult warriors, to receive an education that would allow them to become more empowered advocates. The caregivers included parents, spouses, family member, partners, and anyone who love and care for someone with sickle cell disease. She wants this to be an annual series.

Kristin Beneby

Nassau, The Bahamas

I believe advocating for sickle cell disease is what God has called me to do. Being an inspiration to others, encouraging them that they can do and achieve whatever their heart desires, although at a disadvantage, seeing hope in their eyes and their passion motivates me to continue advocating on their behalf. While I may have sickle cell disease, sickle cell disease doesn’t have me.“


Kristin is a sickle cell warrior and advocate, wife, and mother of a two-year-old son. At the age of five, she was diagnosed with Hb SS. She has made a positive impact in the sickle community by organizations socials, distributing food vouchers, groceries and water supplies during the pandemic, and daily inspirational messages.

Kristin is employed at The Court of Appeal Bahamas as a Judicial Research Counsel. Before her work at the Court of Appeal,  she was employed in the private sector. 

Kristin received two Associate of Arts degrees from Galilee College in Business Administration and Economics. She continued her education at the then College of The Bahamas, completing her Associate of Arts degree in Law & Criminal Justice. She then obtained a Bachelor of Law degree, with credit, from the University of The Bahamas, placing third in her graduating cohort. 

Kristin joined the Bahamas Sickle Cell Association in 2017. In 2019 she was elected as Assistant Treasurer and Vice President 2021. Currently, she serves as the youngest elected president!

Outside of work, Kristin is passionate about helping others, traveling, and spending time with her family. She enjoys advocating for sickle cell warriors in The Bahamas and is excited to move the Bahamas Sickle Cell Association forward in carrying out its objectives. 


Blood Drive and Sickle Cell Screening – In September 2022, under Kristen’s leadership, BSCA hosted a blood drive and free sickle cell screening in New Providence and Exuma, Bahamas. Over the years, the event was organized but not successful. She was ecstatic that this event was pulled off. Over 30 people were screened for sickle cell disease, and numerous people tested positive. Additionally, as blood transfusions are critical to warriors’ care, they were able to replenish the blood bank with donations. 

Sickle Cell Disease and Care Act – although they are in the first stage, Kristen is satisfied that within six months, the drafting of the local Act is being prepared in collaboration with prominent legal drafters in The Bahamas. 

Incorporating BSCA as a non-profit organization – While BSCA has been registered as a company since 1981, it has since been struck off its register. Kristin personally oversaw the re-drafting of the Memorandum of Association and Articles of Association. The documents have been submitted with the relevant application to have BSCA registered in compliance with the Company Act, Bahamas.

Blood Drive
Sickle Cell Screening

Gabriel Brown Purchas

Florida, USA

"Changing the narrative and negative stigmas in the medical community and raising awareness for the public is the motivation behind Gabriel’s work. We will continue to volunteer and share tips to help other warrior kids learn to thrive today. "


Gabriel is a 3-year-old sickle cell warrior and occasionally enjoys showcasing the life behind his diagnosis on social media. Jessica Brown, his mother, and number one advocate, manages his social media page. Gabriel is the inspiration behind their family’s non-profit, The Agape Roots Foundation, where they work to raise awareness directly in the community and impact the sickle cell community by sharing resources and raising funds to be able to support sickle cell warriors. 

The stereotypes and misinformation associated with living with sickle cell disease were not what his mother wanted to leave as a legacy for Gabriel or other young children living with sickle cell disease. Gabriel’s cheerful and kind disposition was evident from a young age, and like most kids his age, he enjoys being active and getting involved. He loved dressing up as a toddler, so his parents began their joint effort of showcasing his unique qualities and their family’s journey navigating the diagnosis of sickle cell disease. They use fashion as a medium of expression and a means for introducing the realities of potential symptoms associated with sickle cell disease in a more impactful way. 

They began work online and in their community when he was one year old. Gabriel uses his social platform to encourage children and families diagnosed with sickle cell disease.


Jessica Brown’s journey to raising awareness began thanks to Gabriel’s birth. As a mother and a writer, he inspired her to start a foundation dedicated to raising awareness for sickle cell disease in the media and in the communities locally and online. 

Gabriel is the main character of the O MY G: Discovering Me book series, the first book in the series details the narrative behind a family receiving their child’s diagnosis of sickle cell disease. His book encourages hope, and faith, inspiring others to ask questions and learn to appreciate the differences they learn about others. The first book in the series, ‘Discovering Me’ teaches children about sickle cell anemia, family, and faith, lending an uplifting voice to the sickle cell story found in children’s literature.

Most recently, Gabriel received a grant based on his work on social media that showcased his community work, fun, and inquisitive nature. His parents used part of this grant to give back to their local hematology/ oncology office, the only team in their area open once a week to service their patients. Gabriel’s family is thankful for their contribution and dedication to their area’s pediatric sickle cell community.  

Gabriel and his story have been featured globally in two magazines and by Pat Pat children’s clothing, working to raise awareness for other warrior children living with the condition globally. The work he does in fashion showcases diversity and inclusion. Gabriel also worked in a My Special Aflac Duck campaign with Aflac to share information on their My Special Aflac Duck robotic companion, free for pediatric patients diagnosed with sickle cell disease.

Pat Pat Clothing
The Agape Roots Foundation

Parker Todd

New York, USA

"Parker never thought it would be possible (pursuing a college education). Society thought he would be unable to do it, but here he is, trying to beat all odds. He made it clear that his goal is to help the sickle cell community by getting the best medical care possible and hopefully finding a cure."


Parker is a 17-year-old sickle cell warrior and advocate. At age 11, he started motivational speaking when he was well enough. He hosted several of his community events with the help of local organizations, like the NYPD. Parker named the main character in his book, "The Sickler," a superhero, to turn around the negative undertone of being a "Sickler,” which helped children find joy and inspiration.

During the pandemic, Parker spent 8-days in the ICU fighting for his life, fought back, and recovered. His parents thought he would slow down with his advocacy work, but Parker did the opposite and is now stronger than ever. After being released from the hospital, Parker started writing his second book, and he is currently writing his second book, "The Adventures of the Sickler: The Battle of two Evils," to be published in 2023.

Parker took the opportunity to continue supporting youth and others with sickle cell disease and spread positivity by creating videos, using social media, or hosting Zoom meetings. 

Today, Parker is pursuing a college education, applying to Yale University, and many others. Now that he is older, the disease is the most unpredictable and challenging as he faces it daily.


In 2017, Parker went to Albany, NY, to help push a bill for more funding for Sickle Cell Research and Resources. He spoke with lawmakers to get them to understand how the disease impacts people differently. Also, to get them to understand why medical professionals should prioritize giving patients the best care possible. Several Senators and Assembly Members were so impressed by Parker’s speech they asked him to return for a private meeting. The "Sickle Cell Treatment Act" designates sickle cell centers for excellence and outpatient treatment centers; tthe bill (A6431) was passed in 2021. 

Parker traveled to San Francisco to meet with pharmaceutical company Global Blood Therapeutics to get them to understand how the disease affects people. Parker listened to their presentation and toured their lab, where treatments are being made to help Sickle Cell Disease patients worldwide. Weekly, Parker meets with fellow young people suffering from sickle cell disease. During group sessions, Parker identifies the needs of group members and motivates them to take better care of themselves. Parker promotes healthy eating to stay crisis-free.  

In 2022, he partnered up with the Make-A-Wish Foundation and provided them with his book "The Adventures of the Sickler" so they can send it to children dealing with sickle cell disease.

Global Blood Therapeutics
Make-A-Wish Foundation

Ruby Rose

Massachusetts, USA

"We have taught Ruby Rose not to be ashamed of her condition but instead to feel special and be proud  because she gets to be a voice for others who have this condition, and teaching is something that she knows is what we need more of in this world."


Ruby Rose is a 7-year-old sickle cell warrior who learned to advocate by educating others. She is self-educating on sickle cell by reading books, watching videos, and trying to learn as much as possible. Every crisis, Ruby Rose uses to gain more knowledge about sickle cell and teach others. She wants to teach children about sickle cell disease since kids spend most of their time in school with their peers; they need to learn about sickle cell to help if she isn’t feeling well. 

She learns as much as she can about sickle cell to further her knowledge and pass it on. Ruby Rose’s parents also found that teaching Ruby the importance of teaching others and herself more about sickle cell disease helps her feel less different than anyone who doesn’t have sickle cell disease. It helps her feel like she was chosen to teach and inspire others so she doesn’t feel ashamed or try to hide her illness from anyone for fear that she will feel different. 

Her parents want her always to feel proud of herself and who she is, while sickle cell disease isn’t all of who she is. It is a part of her, and her parents don’t ever want her to hide that from anyone, so they believe that teaching her to advocate for herself and sickle cell disease will remind her of how special she is.


Her family has also learned the importance of being advocates for Ruby Rose. While Ruby does a lot of self-advocating when she isn’t feeling too well and can’t self-advocate, her family steps in to advocate for her. 

Recently, she had a vaso-occlusive pain crisis and was not put on a continuous drip of pain medication via IV, and because of this, her pain worsened. ER doctors lacked knowledge about sickle cell disease, and her parents expressed and voiced their vital mistake to the chief hematologist. In return, the ER doctors and nurses had to take a mandatory class to ensure the protocol for a child in pain with sickle cell disease. 

Ruby Rose teaches her peers how important it is for her to drink plenty of water, have access to her sweater to stay warm, and take breaks when fatigued. This allows her to self-advocate and teach kids about sickle cell disease, which plays a massive part in the sickle cell community. She teaches children what sickle cell is, what she needs to do to stay healthy, why they may get sick occasionally, and the importance of self-care. 

In schools, helping people understand how important it is for children to learn about sickle cell disease as it affects their communities closely–makes them know how important the representation of sickle cell disease is in schools.

Sickle Cell Disease Walk
Sickle Cell Awareness
World Sickle Cell Day

Precious Gaza

Abuja, Nigeria

"Precious shows through her content how anyone can live a full life despite having a chronic illness. She shows us all what’s possible. She teaches warriors how to stand up and advocate for themselves in a world filled with stigma."


Precious Gaza is a sickle cell warrior and advocate, content marketer and digital creator, a digital coach that has helped over 5000+ individuals, and an emotional intelligence coach. She portrays all round confidence and light through her content and messages. 

Precious entrepreneurship began when working 9-5 jobs wasn’t sustainable because of the chronic pain that occurs due to sickle cell. She would get laid off, and financially she was struggling. She needed to find another way – a job where she didn’t need to answer to anyone when taking that time off for her health. After much research, digital coaching was her niche, and she found freedom with decision-making factors, such as how many clients she will take on at a time. As a digital coach, she would train others to build and market their brand and provide essential tools and strategies to make her clients succeed in their businesses. Her emotional intelligence coaching platform adds to these tactics by implementing a specific mindset, such as resilience, when venturing into being an entrepreneur. 

Not only does she have a reputable business by helping so many people build their own, but she is also a strong advocate for sickle cell and shares her journey through social media. She shows her real-life experiences of what she goes through daily and expresses the myths and stigma of sickle cell disease. She sheds light on how this severe health condition has invisible symptoms – pain is subjective, and therefore, the pain isn’t believed despite the lab results. 


Precious has had a positive impact on so many warriors and also non-warriors. She holds over 1M+ followers on her Instagram. She has a contagious personality that attracts so many and her community continue to expand. There needs to be more recognition of sickle cell disease, especially compared to other chronic illnesses. Precious is part of that change by utilizing the platform she created, educating and spreading awareness on sickle cell. She would meet with her sickle cell warrior followers in person or through zoom. That is the most impactful when having shared experiences and an understanding of living with sickle cell because that is the best way to feel seen. 

Currently, Precious is raising money for a bone marrow transplant. 

Precious was named one of the most inspiring women in Nigeria in 2021 and is now in Selar’s top 100 creators in 2022.  

Precious has been invited to many events, such as the sickle cell conference organized by the Sickle Cell UK partnered with Google and Facebook, the Weekend Show on AIT and others. She has also shared her story with interviews, podcasts, documentaries. 

Selar 100: Top Creators in 2022
Chronic Illness Awareness

Steven Leslie

Texas, USA

"All I wanted was something relatable for us and through God it was able to happen! That we have something that is for us and that is dope! I am inspired by my younger brother Chris Winfield, who sees me for what I can be. Most importantly, my wife Alicia, my imperfections seem so loud to me, but she sees those as stepping stones to my purpose!”


Steven is a sickle cell warrior and advocate, husband and father of a daughter. He has learned to use humor, to navigate through the pain, the fight for adequate care, and the stereotype of his need for pain medication. Through God, Steven was able to bring something the sickle cell community didn’t have, which was memes. Steven has used this humor to minister to the sickle cell community by allowing them to have a place where they feel less isolated and more understood.

Prior to his social media success, Steven would consistently look for sickle cell related memes on Google but would always come up empty and disappointed. All he wanted was something relatable for the sickle cell community. Outside of advocacy, Steven is a Pension Specialist who assists participants with their retirement funds. 

Through Instagram live streaming, Steven brings in discussions on many topics, and includes all individuals in the sickle cell community – parents and siblings. He has live chats with warriors all over the globe. Each live addresses a particular area that they all deal with (i.e., education, medication, work, etc.). Steven also hold weekly lives to keep sickle cell patients informed and in unison. 

Steven wanted to create a platform that was for the sickle cell community.


Steven is consistent in providing content for his community and has made great relationships with fellow warriors along the way. He also has a clothing line that honors the founding date of when sickle cell was discovered (1910). He then donates most of the money to sickle cell organizations. 

Steven conducted a conversation with Mothers of Sickle Cell Warriors, which was phenomenal. He is continually learning that so many of their stories are alike. They went through the same ups and downs, and that bred a connection and community. He also has had discussions with warriors currently navigating bone marrow transplants, and with other social media influencers in the fight for sickle cell awareness.

Steven encourages his community to reach out to him if they feel uncomfortable posting in the comments, when hospitalized, with topics for discussion ideas, and with prayer requests. His followers say, “He can talk to anybody about everything while still praising God for all he’s done for him. He has a beautiful testimony. Sometimes just looking at one of his memes puts a smile on your face and reminds you of the real human fight against an incurable disease.”

Click to see the video
A conversation with the Mothers of SC Warriors

Tito Oye

London, UK

"I believe that the most impact I make (or at least the most meaningful) is the impact made in the lives of individuals with sickle cell. Being able to support individuals with sickle cell from all over the world keeps me going."


Tito is a sickle cell warrior and advocate, passionate about raising awareness of sickle cell. She has lived in London her whole life and works in marketing. She is inspired by her friends and family, and loves spending time with them as they do not treat her differently because of her health, and remind her that even with sickle cell, not to limit her dreams. She is also heavily motivated by her loved ones, who encourage her and support everything her do, especially when she feels burnt out.

Tito’s main motivation is becoming the person that others with sickle cell can relate to, which she did not have herself growing up but wished she had. Whether by advising about pain management, tips when relocating to a colder country, being a much-needed distraction when in pain, or even someone who can listen to her worries. 

Tito has made a big impact within the sickle cell community in a range of ways, such as encouraging more people to give blood, educating the general public on what sickle cell is, and raising money to support people with sickle cell. Now, hearing that she has been able to help people, even in the slightest way, is reward enough.

In the UK, there are not enough black blood donors to meet the ever-growing demand for blood, and Tito decided to do something about it by arranging a few blood drives. What she learned from this experience is that the issue is not about black people not giving blood; from what she has seen time and time again is that we are more than willing to give; it is about the lack of awareness of why it is needed and informing people about the opportunities available for them to give. From this, the NHS took notice and hired her to work with them to continue arranging such events.


Tito’s first blood drive, she signed up over 20 of her friends to give blood. She wanted to make the experience as comfortable as possible, and made food (jollof rice and chicken) and found some familiar food and drink companies that could sponsor the day with some snacks (Supermalt and Olu Olu Foods). She was also able to get in contact with some popular restaurants (Shake Shack and Vapiano) to donate vouchers that she used as prizes for competitions.

Raising awareness for sickle cell is second nature to Tito, but hearing that, she has been able to influence someone’s behavior in a positive way. Many of her friends are very creative people, and one day they randomly came to her with an idea for a film they wanted to make – a film about sickle cell called “His Sickled Journey.” They told her how she inspired this film and that they had learned much from her. She consulted on this project and ensured that what was said/shown accurately depicted the lives living with sickle cell. Seeing this film come to life was beautiful, and she could not be more proud of the outcome. The film was received very well; it gave people an insight into what life is like with sickle cell and encouraged many people to give blood.

One of Tito’s favorite things to do when raising awareness is attending speaking engagements. She was invited to speak at many events about sickle cell hosted by big companies across many industries, including TikTok, Discovery, NHS, and KPMG.

Nigerian Independence Day

Hailey Zwicker

Calgary, Canada

"Hailey studies the psychosocial health and well-being of youth with sickle cell disease (SCD). She shares information on her platform to educate and challenge healthcare providers’ bias around SCD and vows to use her platform to promote the unique voices of those impacted by SCD."


Hailey is a researcher and sickle cell advocate. In 2019, she began working in this field while pursuing medical science research for her Master’s degree. By merging her scientific interests with her strong advocacy for the intersectionality framework, she began researching topics of concern in pediatric SCD (e.g., social health, pain, mental health) but emphasizing and prioritizing the investigation of the impact of sociocultural factors (e.g., socioeconomic status, immigration status, and perceived racism).

Hailey works closely with two patient partners who received bone marrow transplants at her University hospital. The patient partners work closely to guide her research topics, delivery, and analysis. More importantly, they work as a team to try and build relationships between SCD researchers, healthcare providers, and members of the SCD community to aid in establishing rapport, trust, and transparency. This work will lead to improved guidelines, interventions, and treatment for SCD.

Hailey is excited to continue pursuing SCD research and recognizes systems of power. Historically, non-White individuals have been mistreated in medical systems, especially regarding research (e.g., Tuskegee Syphilis Study, HeLa cell line). She has committed herself to constant learning and prioritizes educating herself and highlighting unique experiences many of her research participants have faced in the healthcare system and beyond.


Hailey is working on several studies to improve the well-being of youth with SCD. She has a Master’s thesis titled "The psychosocial impact of SCD in children and adolescents." Published a systematic review and meta-analysis on the health-related quality of life in children and adolescents with SCD. An accepted manuscript following the quality of life of pediatric sibling donors for bone marrow transplant over two years, emphasizing the increase of transplants in non-malignant conditions. And several other manuscripts in preparation, including the investigation of social adjustment in a cohort of youth diagnosed with SCD pre-transplant, a systematic review investigating social competence in children with SCD, and a hospital experience and satisfaction study comparing youth with SCD to youth with cystic fibrosis. 

Two larger studies she is leading include a mixed methods study investigating the experience of pain both pre and post-transplant, and she is collaborating with Columbia University for this study’s recruitment. And finally, her main dissertation investigates social competence and the influence of stroke and sociocultural factors in children living with SCD, using neuroimaging and neuropsychological testing at Alberta Children’s Hospital. Hailey’s supervisor, Dr. Fiona Schulte, and mentor, Dr. Greg Guilcher, are instrumental members of Project Sickle Cure through Sickle Cell Transplant Advocacy and Research Alliance (STAR), providing her with unique trainee opportunity to get involved in large-scale international clinical trials and collaborations, such as her established relationship with Columbia University SCD researchers (Dr. Monica Bhatia).

Hailey shares SCD information on academic platforms (Twitter, Instagram, and Facebook) to help educate and challenge healthcare providers’ bias around SCD (e.g., Sickle Cell Sundays). This includes a number of presentations at national and international conferences. One was on "The impact of perceived racism in children with sickle cell disease and their social adjustment," in the “Equity, diversity, and inclusion in pediatric oncology and hematology research and practice: a knowledge-to-action plan” symposia at the Canadian Association of Psychosocial Oncology Conference 2021.

Presentation on perceived racism in SCD
Actively recruiting for a study on well-being in youth with SCD
Walking 5km to raise awareness of SCD

Maya Bloomberg

Florida, USA

"I think sickle cell is the greatest health and racial disparity in modern medicine. It is highly stigmatized, misunderstood, and relatively underserved compared to other rarer conditions. It’s hard to sit and watch on the sidelines in science. I show up to be a part of the change in the care, attitude, and treatment so desperately needed for this community."


Maya is a hematology nurse practitioner and sickle cell advocate, wife, and mother. She started her career as an inpatient Registered Nurse, caring for countless patients admitted with sickle cell crises. It wasn’t until becoming a Nurse Practitioner specializing in sickle cell that she learned the head-to-toe effects of sickle cell, worsened by the stigmatization and misunderstanding that sickle cell is just a disorder of pain.

Maya learned so much from her patients, especially the shared experiences of the horror stories of judgment and mistreatment. This ignited her passion for sickle cell and want to make an impact in bridging health and racial disparities.

For the past two years, she has used her social media page to capture a larger population and educate warriors to become their most prominent advocates to live a longer and improved quality of life.


Maya currently cares for 350+ patients living with sickle cell disease out of Miami, including the largest Hispanic population living with sickle cell disease. 

Maya served as a medical expert in several symposiums, podcasts, and documentaries. There need to be more sickle cell providers. Many patients connect with a hematology/oncologist who may only focus on the pain rather than the full effects sickle cell can cause. Maya strives to use her expertise to help others understand their condition.

Maya grew her social media @theHemeNP following to over 10,000+ and showed up daily to educate and entertain to help others become their biggest advocate. With her easy-to-understand and entertaining content, she has helped others have more meaningful conversations with their providers, learn how to recognize and speak up when experiencing mistreatment, and minimize triggers from interfering with their lives. Maya has received countless unsolicited messages from warriors worldwide, stating how her page has validated their experiences and that they have learned something new, which continuously validates why she is doing what she is doing.

A Journey with Sickle Cell Feat. Alidor aka A Star: Sickle Cell Warrior and Advocate Musician