SCD EDUCATION
BILL APPROVED!
After more than a decade of advocacy, Merlene Smith-Sotillo, co-founder of the Sickle Cell Awareness Foundation in South Jamaica, celebrated a major milestone when Gov. Kathy Hochul signed a statewide sickle cell detection and education bill into law on Dec. 8. Smith-Sotillo had been fighting for the legislation since October 2011.
Her advocacy is deeply personal. Her son, Syd Sotillo, co-founder of the foundation, died at age 30 in April 2012 from a severe form of sickle cell disease that caused organ failure. Her daughter, Cathyann Smith, also lives with the disease and manages it with hydroxyurea. Smith-Sotillo described the bill’s passage as a tremendous relief and an important step forward.
Introduced by Assemblywoman Alicia Hyndman and State Sen. James Sanders Jr., the law establishes a health equity council to guide the state health commissioner in promoting screening, early detection, and public education. It also supports outreach efforts, data collection, professional training, and grants for organizations addressing sickle cell disease.
Sickle cell disease is an inherited condition in which abnormal, crescent-shaped red blood cells restrict blood flow and reduce oxygen delivery, leading to severe pain, organ damage, and other complications.
The bill’s signing coincided with another breakthrough: the U.S. Food and Drug Administration’s approval of CRISPR-based gene-editing therapy for sickle cell disease. The treatment involves modifying a patient’s stem cells to correct the genetic mutation. While this advancement offers hope, it remains largely inaccessible due to its estimated $2.2 million cost, limited facilities, lengthy treatment process, and intensive medical requirements.
Despite these challenges, both Hyndman and Smith-Sotillo emphasized the importance of ensuring broader access to such innovations. Smith-Sotillo remains encouraged by the progress and looks forward to sharing both developments—the new law and the emerging treatment options—with her daughter.
CATHYANN SMITH
Daughter
Sickle Cell Awareness Foundation Corp, A Light of Hope
In the world of advocacy and philanthropy, there are few individuals whose unwavering dedication and tireless efforts leave an indelible mark on society. Mrs. Merlene Smith Sotillo is undoubtedly one of these remarkable individuals, whose profound impact in the fight against Sickle Cell Disease has touched countless lives and transformed the landscape of healthcare and community support. As the founder of Scafcorpint Organization, Mrs. Merlene has been a driving force behind initiatives for Sickle Cell Disease education, awareness, research, wellness, and community support advocacy.
Mrs. Merlene journey as a passionate advocate for Sickle Cell Disease began with a deeply personal and heartbreaking experience—the loss of her beloved son, Syd Sotillo, to this debilitating illness. Syd’s courageous battle with Sickle Cell Disease not only inspired his mother to take action but also led to the formation of the Scafcorpint Organization. In the midst of her grief, Mrs. Merlene found the strength and determination to turn her pain into purpose, vowing to honor her son’s memory by making a meaningful difference in the lives of those affected by this condition.
The Scafci Organization stands as a testament to Mrs. Merlene unwavering commitment to advocating for individuals and families impacted by Sickle Cell Disease. Through her visionary leadership, the organization has become a cornerstone of support and empowerment for patients, caregivers, and healthcare professionals alike. From raising public awareness and promoting education about the disease to championing groundbreaking research initiatives, Mrs. Merlene’s multifaceted approach has significantly advanced the cause of Sickle Cell Disease advocacy.
One of the most remarkable achievements in Mrs. Merlene’s journey as an advocate is the successful lobbying for a crucial bill in Congress to elevate Sickle Cell Anemia Awareness. This landmark legislation, which Mrs. Merlene and her dedicated team tirelessly fought for, represents a pivotal milestone in the ongoing battle against Sickle Cell Disease. Their unwavering determination and steadfast advocacy have not only brought national attention to the urgency of addressing this often-overlooked health issue but have also paved the way for enhanced resources, support, and care for those affected by the disease.
Mrs. Merlene Smith Sotillo’s impact extends far beyond the realm of advocacy and legislation. Her compassion, resilience, and unwavering spirit have served as a beacon of hope for individuals and families navigating the challenges of Sickle Cell Disease. Through her tireless efforts, she has fostered a community of support and understanding, offering solace to those grappling with the complexities of this condition and empowering them to live their lives with dignity and strength.
As we reflect on Mrs. Merlene extraordinary journey, we are reminded of the remarkable power of the human spirit to effect meaningful change. Her dedication serves as an inspiration to us all, demonstrating the profound impact that one individual can have in shaping a brighter, more inclusive future for those affected by Sickle Cell Disease. Mrs. Merlene Smith Sotillo’s legacy is a testament to the transformative force of compassion, advocacy, and unwavering determination, and her contributions will continue to resonate as a source of hope and empowerment for generations to come.
In honoring the memory of her beloved son, Syd Sotillo, Mrs. Merlene Smith Sotillo has not only illuminated the path toward greater understanding and support for individuals and families affected by Sickle Cell Disease but has also exemplified the extraordinary impact of love, resilience, and unwavering dedication in the face of adversity. Her unwavering commitment to advocacy serves as a testament to the transformative power of the human spirit, inspiring us all to stand as beacons of hope in the lives of others. As we continue to champion Mrs. Merlene’s cause and honor the indelible legacy of Syd Sotillo, let us be reminded that through compassion, unity, and tireless advocacy, we have the power to ignite positive change and create a world where every individual affected by Sickle Cell Disease is embraced with empathy, support, and hope.
FIRST SICKLE CELL CURE?
Cohen Children’s Medical Center celebrated the “new birthday” of 21-year-old Sebastien Beauzile, the first patient in New York to receive the genetic treatment Lyfgenia to cure his sickle cell anemia, at a press conference on March 13. Civil rights attorney Benjamin Crump also announced a $100,000 donation to Northwell Health to further the health system’s efforts to treat sickle cell disease.
Sickle cell disease is a family of conditions that affect a patient’s red blood cells, causing them to be misshapen. The misshapen cells can become stuck in blood vessels and block blood flow, causing many different symptoms, including extreme episodes of pain; eye, lung and kidney problems; stroke; and more.
Until now, sickle cell disease was treated with medical management, and with a bone marrow transplant in extreme cases. But that requires a compatible donor and a course of medication for months post-transplant to not reject the donor marrow in their body.
“Sickle cell is a debilitating, often-overlooked disease. But treatments like Lyfgenia are changing that,” said Jeffrey Lipton, MD, chief of the division of pediatric hematology/oncology & stem cell transplant at Cohen. “Cohen Children’s has been leading the way in genetic treatments and sickle cell therapy for years. And thanks to Ben Crump’s generous donation, we’ll continue to advance sickle cell care and cure as many people as possible.”
