VOL.7. ____________________________________________________. __. __ JUNE 2024 ISSUE

A NEWSLETTER FROM OUR

SCMA FAMILY TO YOURS

Greetings,

As we step into the heart of 2024, we reflect on the significance of events that have deeply impacted our community.

Recently, we commemorated Sickle Cell Day, a time to acknowledge the challenges faced by those living with sickle cell disease and to reaffirm our commitment to advocate for patients living with sickle cell. While the official day has passed, our dedication to this cause continues to resonate throughout our efforts and collaborations.

We are thrilled to share some of our pivotal moments and collaborative efforts that highlight our community's strength and dedication. Our ongoing initiatives and the support we offer are testaments to the resilience and spirit of those affected by sickle cell disease, and to the broader health and well-being of our community.

Thank you for joining us in this important reflection and for your continued support in all our endeavors.

Advancing Hope: A Leap Forward in Sickle Cell Disease Research Funding

Last 29th February 2024, WMFE's "Engage," featuring our very own Dr. Simone Uwan, kicked off with the program's host, Ms. Cheryn Stone, setting the stage for a pivotal discussion on sickle cell disease.

In a significant stride toward conquering this debilitating condition, recent legislative and scientific advancements have brought new hope to those affected. With approximately 100,000 Americans living with sickle cell disease, and nearly 7,000 new cases diagnosed annually in Florida alone, the urgency for effective treatments and comprehensive research has never been more critical.

Dr. Simone Uwan's Personal Journey

Highlighting the personal impact of sickle cell disease, Dr. Simone Uwan, co-founder of Sickle Cell Medical Advocacy Inc. and a respected Orlando physician, shared her harrowing experiences on the show. Dr. Uwan described the crippling effects that not only challenged her health from a young age but also prematurely ended her career. Her powerful testimony underscores the need for continued research and better treatment options.

Legislative Milestone: $10 Million Annual Funding

In an inspiring demonstration of bipartisan support, Florida House Representative Kelly Skidmore successfully sponsored a bill that allocates $10 million annually to sickle cell research and treatment. This landmark legislation, which passed with unanimous support in the Florida House, signifies a transformative commitment to tackling sickle cell disease at both the state and national levels. Rep. Skidmore joined "Engage" to discuss her motivations for prioritizing this bill, emphasizing that it represents a vital step toward equality in healthcare and support for vulnerable populations. The bill later sailed through the Senate and was subsequently signed into law on May 28th, 2024, by Governor Ron DeSantis.

Scientific Breakthroughs in Gene-Editing

Adding to the optimistic outlook, WMFE Health Reporter Joe Mario Pedersen brought attention to a groundbreaking gene-editing treatment approved by the FDA in December. This innovative approach has the potential to revolutionize the treatment landscape for sickle cell disease, particularly in Central Florida. The discussion highlighted how these scientific advancements could drastically improve the quality of life for patients, offering them a future free from the pain and limitations imposed by the disease.

As we celebrate these milestones, we remain committed to our mission of advocating for those affected by sickle cell disease. The continued support for research and the development of new treatments are crucial in our fight to eradicate this condition and restore hope to countless individuals and families.

Month in Review April 2024:

Spotlight on Partnerships

Month in Review April 2024: Exciting Partnership Announcement: SCMA Joins Forces with "On The Air Sickled" Podcast

It's official! We are thrilled to announce a groundbreaking partnership between Sickle Cell Medical Advocacy Inc. (SCMA) and the "On The Air Sickled" podcast. This collaboration marks a significant milestone in our ongoing efforts to raise awareness and foster a deeper understanding of sickle cell disease.

Our Shared Mission

Together with "On The Air Sickled," we aim to shift the dialogue around sickle cell disease and share the genuine stories of those battling this condition. Our collaboration will also spotlight the experiences of caregivers, whose lives are profoundly impacted by the disease. These stories not only highlight the challenges faced by individuals and families but also celebrate their resilience and strength.



Looking Forward to Making "Good Trouble"

In the words of the late Congressman John Lewis, we look forward to making “good trouble” together, advocating for change and pushing the boundaries of what is possible in sickle cell care and awareness. This partnership is more than just a platform for sharing stories; it's a catalyst for change, inspiring action and encouraging a more inclusive and compassionate discourse.



We are excited about the opportunities this partnership brings and are committed to making a lasting impact. Join us in this journey by tuning into "On The Air Sickled" and by visiting our website for more information and ways to get involved: www.sicklecellmedicaladvocacy.org.

Welcoming Allison Morris and "We Reign Sickle Cell Corporation"

Partners on the Spotlight:

Join Us in Transforming Sickle Cell Care

At Sickle Cell Medical Advocacy Inc. (SCMA), we are privileged to work alongside some of the most dedicated organizations in the fight against Sickle Cell Disease (SCD). Each partner brings unique strengths and a shared commitment to advocacy, education, and care. Today, we highlight these incredible organizations and invite you to join us in making a substantial impact.

SickleCell Disease Association of America

Partnering with a cornerstone in the community, the SickleCell Disease Association of America leads efforts across the nation, providing essential support and advocacy to improve the lives of those affected by SCD.

The B Strong Group

Founded by Brenda Green, The B Strong Group is committed to spreading awareness through education and empowerment, with a special focus on the importance of blood donation to support those living with SCD.

Foundation For Sickle Cell Disease Research

Under the leadership of Dr. Lanetta Bronté-Hall, the Foundation For Sickle Cell Disease Research focuses on innovative research and clinical trials, aiming to enhance the quality of life and survival rates for those afflicted by SCD.

ProSightful Counseling and Consulting

Led by Dr. Gerald C. Igboanusi, ProSightful Counseling and Consulting provides culturally responsive and affordable mental health services, playing a critical role in the mental well-being of the SCD community.

The Levi Long Sickle Cell Association

With a mission to Aware, Inspire, Motivate, and Educate, The Levi Long Sickle Cell Association empowers individuals with SCD through education and advocacy.

On The Air Sickled

Chaired by Chardonée and Otmar Donald, On The Air Sickled brings to light the real stories of the SCD community, promoting awareness and providing financial support through initiatives like the “Flip The Bill Program”.

The Riley Foundation

Focusing on holistic care, The Riley Foundation addresses the mental, physical, and emotional aspects of SCD, advocating for comprehensive support and education.

Shanavia’s Dream Sickle Cell Clinic

Shanavia’s Dream Sickle Cell Clinic assists those with SCD in rural communities, providing essential services like pain management and transportation for treatment.

Sickle Cell Awareness 365

Mia Robinson leads Sickle Cell Awareness 365, which is dedicated to bridging knowledge gaps and empowering young individuals with SCD to take charge of their health care.

Voices of Winged Warriors

Voices of Winged Warriors focuses on improving emergency care and healthcare access for those with SCD, driven by advocacy and education to create lasting change.

We Reign Sickle Cell Corporation

We Reign Sickle Cell Corporation increases awareness and supports the sickle cell population in rural areas, offering comprehensive care and educational support.

A Call to Action: Be a Part of the Change

As we continue to push boundaries and improve healthcare for SCD patients across the USA, we invite more organizations to partner with us. Your involvement can sponsor the training of healthcare navigators, directly impacting patients' lives in your community. Each contribution counts, and together, we can achieve a monumental shift in the care and treatment of Sickle Cell Disease.

Join us in this vital mission. Your support not only helps those in need but also positions your organization as a leader in transformative healthcare advocacy. Together, we can make a difference.



For more information on how to become a partner and sponsor healthcare navigators, please visit our website at www.sicklecellmedicaladvocacy.org. May you be blessed as you join us in doing good.

Month in Review May 2024:

Strengthening Our Advocacy: 2024 Florida State Sickle Cell Disease Forum

As part of our ongoing commitment to advancing the cause of equity in healthcare, the 2024 Florida State Sickle Cell Disease Forum brought together a vibrant community of leaders, advocates, and policy champions. This year’s theme, "Partnering to Advocate and Educate for Equity, Health Care, and Policy Champions," underscored our dedication to fostering an inclusive and equitable healthcare system.

The forum, brilliantly organized by Mrs. Mary Murph, CEO of SCDAA St. Pete Chapter, was a gathering of minds and hearts, all united by a common goal—to make a significant impact in the lives of those affected by sickle cell disease. It was not only a platform for dialogue but also a celebration of the collective spirit that drives our advocacy efforts.

Among the highlights of the day was the participation of our very own Dr. Simone Uwan, who shared insights and strategies for furthering healthcare equity. It was an enriching experience to see familiar faces and welcome new ones into our circle of advocacy. The connections forged and knowledge shared during this forum are invaluable as we continue our work.

As we move forward, these engagements will be pivotal in shaping our strategies and efforts. Together, we are stronger, and each step we take is a step toward a future where healthcare equity is not just an ideal, but a reality.

See Dr. Simone speak on the 2024 Florida State Sickle Cell Disease Forum. Click on the video below:

Spotlight on Community Collaboration:

The Orlando Diversity Blood Drive

In a remarkable initiative aimed at addressing the critical needs of sickle cell patients, Sickle Cell Medical Advocacy Inc. joined forces with The Levi Long Sickle Cell Foundation and Kids Conquering Sickle Cell Disease Foundation to organize our first-ever collaborative Diversity Blood Drive. This event was a response to the urgent requirement for blood matches for sickle cell patients, who need closely matched blood to avoid the life-threatening risks of blood rejection.

The initiative called upon our black and brown brothers and sisters to step forward, resulting in a substantial turnout across three strategically chosen locations in Orlando on May 19:

• Just Breathe Salt Therapy, Winter Park
• Super Walmart, East Colonial Drive, Orlando
• The Loop Shopping Plaza, Kissimmee

This blood drive was a testament to our community's unity and commitment to making a tangible difference. The efforts at 'The Loop' Plaza alone garnered over 17 units of blood, with the North location contributing an additional 22 units. Although we faced a last-minute cancellation of the One Blood bus at the East location, our collective effort still resulted in nearly 40 units of blood collected, surpassing our expectations with significant contributions from diverse donors.

A Word of Gratitude

This success was not just in the numbers but in the spirit of collaboration and support demonstrated by all involved. I am immensely grateful to Delonda Garcia from Hope Worldwide Orlando, Keiana Diann Long Hargrett, and Carla Lewis, whose dedication was pivotal in this endeavor. Their commitment underlines the power of community and the impact of collective action.

Photos of the Diversity Blood Drive:

Celebrating Our New Sickle Cell Healthcare Navigators

We are excited to announce the graduation of 19 dedicated volunteers from our Sickle Cell Healthcare Navigation Certification last June 2nd. This rigorous ten-week online program prepares participants to become certified navigators, capable of effectively supporting sickle cell patients during critical times.

Training Excellence

Our curriculum, aligned with NIH and ASH guidelines, ensures navigators are HIPAA-certified and skilled in virtual communication, facilitating seamless interactions between ER/hospital providers and patients.

Navigator Roles and Opportunities

These newly certified navigators will provide essential Health Navigation Assistance, acting as knowledgeable liaisons for sickle cell patients experiencing pain crises. While some navigators are employed directly by SCMA to support registered patients continuously, all graduates are encouraged to use their skills to assist in their communities.

Get Connected

We invite those interested in securing a Sickle Cell Healthcare Navigator to contact us before an emergency, allowing for personalized care planning. However, we are always ready to assist at any stage.

Be a part of this transformative journey. For more information on how to become a Sickle Cell Healthcare Navigator, visit our website or contact us directly. Let's make a difference, one patient at a time.

Join Our Leadership: Board Recruitment at Sickle Cell Medical Advocacy Inc.

At Sickle Cell Medical Advocacy Inc. (SCMA), we are committed to fostering leadership and advocacy in the fight against Sickle Cell Disease. We believe in the power of community and the impact that dedicated leadership can have on our mission. As we continue to grow and expand our efforts, we are excited to announce opportunities for new members to join our board.

Open Positions and Roles

We are currently seeking passionate and motivated individuals to fill several key positions on our board. Each role is crucial in advancing our mission and offers a chance to make significant contributions to the sickle cell community.

• President/Vice President (Starting September 2024)
• This is a co-lead position, with one individual serving as President and the other as Vice President. These roles are designed to support each other in leading the board effectively. Training can begin immediately to ensure a smooth transition. We have filled one co-leader position and are seeking one more dedicated leader to complete this team.
• Secretary of the Board (Available Immediately)
• We are looking for a co-lead to support our current Secretary, especially during times of schedule conflicts. This role is essential for maintaining the efficiency and organization of our board activities.
• Chair of Funding Committee (Available Immediately)
• This position will work closely with the board's Treasurer to spearhead our funding initiatives. The role is crucial for securing the financial resources necessary to support and expand our programs and outreach.

Role Expectations and Responsibilities

While the responsibility for each role is tailored to fit the evolving needs of our organization, we have prepared a detailed description of potential responsibilities to anticipate future demands as we grow. This approach ensures that all board members are well-prepared to adapt and expand their roles as needed.

For a detailed understanding of these roles and to view the full role descriptions, please visit the attached page link here.

How to Apply

If you are passionate about making a difference and possess the skills and dedication required for these roles, we encourage you to apply. Joining the SCMA board is a chance to be part of a vibrant community dedicated to making a lasting impact in the lives of those affected by Sickle Cell Disease.

To express your interest or to apply for a board position, please visit our website or contact our board recruitment team directly at recruitment@scma.org. We look forward to welcoming new leaders to our team and together, driving forward the mission of SCMA.