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Season's Greetings from SCMA!
Hello Simone,
As the year draws to a close and we embrace the festive spirit, we are thrilled to share not just our holiday wishes but also the significant strides we've made together.
In this special edition of our newsletter, titled "Reflecting on 2024: SCMA's Top Achievements and Transformations," we celebrate the milestones that have marked our journey over the past year.
From groundbreaking initiatives to empowering community engagements, each story in our “Top 10” list highlights our collective efforts to improve health, advocacy, and support for those affected by sickle cell disease. We are inspired by the progress we've made and grateful for the vibrant community that makes it all possible.
Join us as we revisit these memorable moments, filled with the spirit of the season, and look ahead to continuing our mission with renewed energy and hope.
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Reflecting on 2024:
SCMA's Top Achievements
and Transformations
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Transformative Talks:
NPR’s Feature on SCMA’s Navigators
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On January 25, SCMA was featured in a moving NPR segment with Barbara Hamm Lee, spotlighting our navigators and patients as they shared their transformative experiences with our programs. Starting at minute 7:55, listeners were treated to heartfelt stories of advocacy and empowerment that underline the positive changes and personal growth made possible through SCMA's support.
We encourage everyone in our community to listen to these powerful testimonials and gain a deeper appreciation for the impactful work being done. Tune in to the inspiring segment here.
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Diversity in Action:
SCMA’s May Blood Drive
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This May, SCMA hosted a Diversity Blood Drive that was not only a celebration of community but also a vital support to those with sickle cell disease. We successfully collected over 20 units of blood, thanks to the spirited participation of many individuals, especially from communities of color, who came together to address the specific blood needs of the sickle cell community.
The event was a vibrant display of unity and purpose, reflecting our commitment to making a tangible difference. The enthusiasm and solidarity shown by all participants were truly inspiring. Check out our Facebook post for more on this impactful event.
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Leadership and Collaboration:
Florida State SCD Meeting
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In May, SCMA participated in the 2024 Florida State Sickle Cell Disease Forum, an essential gathering aimed at advancing healthcare equity. Themed "Partnering to Advocate and Educate for Equity, Health Care, and Policy Champions," the forum highlighted our unwavering commitment to creating an inclusive healthcare system. Organized by Mrs. Mary Murph of the SCDAA St. Pete Chapter, the event brought together leaders and advocates unified in their goal to impact positively those affected by sickle cell disease.
Dr. Simone Uwan, representing SCMA, shared valuable strategies for promoting healthcare equity. The forum was not only a platform for insightful dialogue but also a celebration of community and collaboration. The connections and knowledge gained here are crucial as we continue to advocate for a future where healthcare equity is a realized standard.
For more insights and to view pictures from the event, click here.
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Celebrating Education:
SCMA's HNC Graduation
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On June 2nd, SCMA proudly celebrated the graduation of 19 dedicated volunteers from our Sickle Cell Healthcare Navigation Certification Program. This rigorous ten-week online course, aligned with NIH and ASH guidelines, prepares participants to become certified navigators. Equipped with HIPAA certification and specialized in virtual communication, these navigators are now adept at supporting sickle cell patients during critical times, facilitating effective interactions between emergency room/hospital providers and patients.
The graduation ceremony was a profound moment of honor and privilege, as expressed by our leader: "What a complete honor it was this evening to graduate another group of newly minted Sickle Cell Healthcare Navigators who are ready to advocate for Sickle Cell patients. I am so honored and privileged to do this work and to be alongside so many who do this work without complaining. To my class: Congratulations! All the best to you! May you reap what you sow and may you sow only good things!"
These newly certified navigators will play essential roles, acting as knowledgeable liaisons for patients experiencing pain crises. While some will be employed directly by SCMA to continuously support registered patients, all graduates are encouraged to use their skills to assist in their communities. We invite those interested in securing a Sickle Cell Healthcare Navigator to contact us before an emergency to allow for personalized care planning. However, we are always ready to assist at any stage.
View pictures from the graduation ceremony here.
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Global Partnership:
Meeting with Dr. Annette Akinsete
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In July, Dr. Simone Uwan and co-founder of Sickle Cell Medical Advocacy Inc Mr. Aniekan Uwan traveled to Nigeria, West Africa. While there, they had the honor of connecting with Dr. Annette Akinsete, president of The Sickle Cell Foundation of Nigeria, a leading figure in the fight against sickle cell disease in West Africa. The Uwans toured the facility where Dr. Akinsete and her team work tirelessly, with limited resources, to meet major health needs of the sickle cell patients. We had a strategic meeting that focused on enhancing our mutual goals of education, treatment, and patient advocacy.
This partnership aims to leverage the strengths of both organizations to improve care and support for individuals living with sickle cell disease, not just locally but on a global scale. The discussions centered around shared strategies for advancing patient care, research, and public awareness campaigns that are culturally relevant and impactful.
Learn more about Dr. Annette Akinsete and Sickle Cell Foundation Nigeria here.
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Three Years of Growth:
SCMA’s Anniversary Celebration
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As we celebrate three years of Sickle Cell Medical Advocacy Inc., we reflect on our journey together, dedicated to breaking down barriers in healthcare for those with sickle cell disease (SCD).
This anniversary is not just a milestone, but a celebration of courage, resilience, and the spirit of our SCD warriors who share their challenges, victories, and joys.
These powerful stories of our community members highlight the transformative impact we can achieve together. We invite you to explore these inspiring narratives and discover the big, beautiful lives behind our cause. Your continued support helps propel our vital advocacy forward, making a real difference in the lives of many.
Be the Change: Read their stories and join our cause.
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Community Engagement:
Celebrating Sickle Cell Awareness Month
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In honor of Sickle Cell Awareness Month, SCMA hosted a significant event, pulling together our Sickle Cell Healthcare Navigators from the Central Florida area. This meetup, organized by Sickle Cell Medical Advocacy, focused on strengthening connections within our navigator community and offering support and resources to those who work tirelessly on behalf of sickle cell patients.
While the initially planned free 15-minute medical consults were replaced with other engaging activities, attendees received valuable educational materials and Wawa gift cards to compensate for their travel expenses. This adjustment ensured that our navigators could enjoy the gathering without logistical concerns, fully immersing themselves in the educational and supportive atmosphere of the event.
View photos and more from our Sickle Cell Awareness celebration.
In addition to the meetup, we were honored to have our efforts featured in an insightful interview with Dr. Ahmar Zaidi on Cheat Codes, a podcast dedicated to empowering lives affected by sickle cell disease. This conversation sheds light on the ongoing challenges and significant strides we are making in sickle cell advocacy.
Watch the inspiring interview here.
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Empowering Patients:
SC-H.E.L.P. Classes and SCDAA Convention
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October was a transformative month at SCMA, highlighted by the launch of our SC-H.E.L.P. (Sickle Cell Health Excellence Learning Project) classes. These sessions are particularly vital as they address common concerns among sickle cell patients, such as ineffective pain management in emergency departments. "I always hear patients say when they go to the ED and get oral medications that it was a waste of their time because they could’ve done that at home," notes our leadership. "But is that really true? Do you know what to do to still get pain relief? Let us teach you!"
A brand new session was added to our SC-H.E.L.P. course specifically addressing these issues, training patients on how to navigate the E.R for quicker responses, what to ask for, and how to ask for it, empowering them to be powerful self-advocates.
Simultaneously, our presence at the SCDAA (Sickle Cell Disease Association of America) Convention was impactful.
"I'm truly impressed by the outstanding representation of SCMA’s dedicated Healthcare Navigators at the SCDAA 2024 convention," Dr. Simone expressed. These remarkable individuals, stationed in twenty-two states, respond promptly when a Sickle Cell client reaches out for help. They are always prepared to advocate for patients facing mistreatment during painful crises. This convention was a prime opportunity for our team to demonstrate their dedication and expertise, contributing significantly to the national dialogue on sickle cell disease treatment and advocacy.
Here are some snaps from the event, showcasing the energy and commitment of our team.
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Inspiring Futures:
Health Navigators Graduation
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We are proud to announce the graduation of our latest cohort of Sickle Cell Healthcare Navigators. These dedicated individuals have completed a rigorous year-long training program, equipping them to advocate effectively for patients navigating the complexities of healthcare systems.
Highlights from the Graduation Ceremony:
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Number of Graduates: This year, we celebrated 94 new navigators, now operational across 23 states.
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Impact: Our graduates have collectively contributed over 8,000 volunteer hours this year, providing invaluable support to over 300 patients.
For a full list of the graduates and to learn more about their individual contributions, click here.
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Strengthening Support:
MTS and SCMA Partnership
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In a significant stride toward expanding our advocacy, SCMA is thrilled to announce a new partnership with the MTS Sickle Cell Foundation. This collaboration will enhance our ability to train and support healthcare navigators dedicated to assisting the sickle cell community.
Partnership Details:
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Sponsorship: The MTS Sickle Cell Foundation has pledged to sponsor two students annually for the next five years, with $1,500 to support their certification as Sickle Cell Healthcare Navigators.
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Training: Sponsored students will undergo SCMA’s comprehensive ten-week online program and continue to receive monthly training sessions to refine their skills.
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How Can You Help:
We invite you to support this vital mission. By matching the $750 sponsorship from MTS for our students, you can help us build a national network of advocates. Help us train more navigators by visiting our donation page and making a contribution. You may also visit our website or contact us directly at 407-906-3019 for more information.
Acknowledging our Sponsors:
We extend our heartfelt thanks to our sponsors for their continued support and commitment to the sickle cell community:
- Vertex Pharmaceuticals - Platinum sponsor
- Pfizer - Gold sponsor
- Bluebird Bio - Silver sponsor
- Agios Pharmaceuticals – Bronze sponsor
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Join us in making a difference!
For more detailed information and to make a donation, please click the button below:
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Connect With Us
For further details about our initiatives, or if you wish to speak with our representatives, please feel free to reach out.
Media Contacts:
Together, let’s empower those who empower others!
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Warm regards,
Your Sickle Cell Medical Advocacy Family
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DISCOVER THE SCMA WEBSITE TODAY | |
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Discover a world of hope and support for those affected by sickle cell disease.
Visit our website to learn more about our impactful medical advocacy organization dedicated to improving the lives of individuals with this condition.
Together, we can make a difference in the fight against sickle cell disease. Join us in spreading awareness and advocating for better treatment options.
Explore our website today and be a part of the movement towards a brighter, healthier future for those living with sickle cell.
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