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MedicAlert Foundation, SCDAA & Fulcrum Therapeutics Partner

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MedicAlert Foundation, Sickle Cell Disease Association of America, Inc. (SCDAA) and Fulcrum Therapeutics Partner to Accelerate Emergency Department Access to Critical Care Information for People Living with Sickle Cell Disease

Three-year collaboration is aimed at enhancing a key aspect of sickle cell management: expediting care during a pain crisis

March 19, 2026 — MedicAlert Foundation, the leading nonprofit providing medical IDs and emergency medical information services, Sickle Cell Disease Association of America, Inc., (SCDAA), the national voice for people affected by sickle cell disease and their caregivers, and Fulcrum Therapeutics Inc. (Fulcrum) (Nasdaq: FULC), a leader in advancing therapies for underserved patient populations, today announced a new partnership designed to help streamline and expedite emergency department (ED) care for people living with sickle cell disease (SCD) through rapid access to patient-specific care plans.

Individuals living with SCD, an inherited blood disorder, frequently seek care in EDs during acute pain crises. In these urgent care situations, immediate access to health information is a vital step in helping clinicians deliver the timely, targeted care that people with SCD need.

“Too often, individuals living with SCD face barriers to receiving appropriate and compassionate care quickly during a pain crisis in the emergency department,” said Regina Hartfield, President and CEO, SCDAA. “This partnership represents an important step forward in this program, originally launched in 2023 between MedicAlert and SCDAA. Fulcrum’s commitment will enable us to broaden our reach into SCDAA’s membership and to the SCD community and will empower so many more individuals living with SCD with a trusted way to effectively share their care and/or pain plans and medical information with emergency clinicians, helping ensure their voices and needs are recognized when they seek care.”

Through this program, participants receive a MedicAlert Smart Medical ID Card linked to a secure digital health profile. When the card’s QR code is scanned by ED personnel, clinicians can quickly access essential medical information including the patient’s physician-approved sickle cell pain plan, hematologist contact information, medications, allergies, and other vital health data.

“When a person with SCD comes to the ED during a pain crisis, lack of access to patient-specific care plans can result in prolonged suffering,” said Karen Cassel, President and CEO, MedicAlert Foundation “That’s where our emergency response system comes in. It’s designed to help address this pain point by enabling faster clinical decision-making.”

SCD is long overdue for improvements in care coordination to help ease the burden of this painful and devastating disease that affects nearly 100,000 people in the U.S., many of whom have been left behind amid the shortcomings in the current landscape. The often unmet needs of patients necessitate urgency to adopt new and unique collaborations that help close the gap in their experiences.

“At Fulcrum, we are committed not only to developing innovative therapies, but also to advancing solutions that improve the entire care journey for people living with SCD,” said Alex Sapir, CEO, Fulcrum Therapeutics. “Through this partnership, we hope to help solve some of the most pervasive challenges people living with SCD face and reduce delays in care when minutes matter most.”

For those living with SCD who are interested in learning more or securing a MedicAlert Smart Medical ID Card through this partnership, please visit www.medicalert.org/sicklecellpilot.

About Fulcrum Therapeutics

Fulcrum Therapeutics is a clinical-stage biopharmaceutical company focused on developing small molecules to improve the lives of patients with genetically defined rare diseases in areas of high unmet medical need. Fulcrum’s lead clinical program is pociredir, a small molecule designed to increase expression of fetal hemoglobin for the treatment of sickle cell disease. Fulcrum uses proprietary technology to identify drug targets that can modulate gene expression to treat the known root cause of gene mis-expression. For more information, visit www.fulcrumtx.com

About the Sickle Cell Disease Association of America

The Sickle Cell Disease Association of America, Inc. (SCDAA) advocates for people affected by sickle cell conditions and empowers community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure. The association and its more than 50 member organizations support sickle cell research, public and professional health education and community services.  (www.sicklecelldisease.org)

About MedicAlert Foundation

The MedicAlert Foundation is a global nonprofit organization dedicated to protecting and saving lives by providing trusted medical identification and emergency health information services. MedicAlert’s secure digital health profiles and medical ID products ensure that critical health information is available to first responders and healthcare providers during medical emergencies. For more information, visit www.medicalert.org

In Remembrance of KiKi Shepard

The Sickle Cell Disease Association of America, Inc. (SCDAA) mourns the loss of KiKi Shepard, an actress and dedicated sickle cell advocate, who passed away recently at the age of 74. Many knew KiKi as a longtime co-host of the “Showtime at the Apollo” variety show, but she was also the founder of sickle cell nonprofit The KIS Foundation and worked closely with many individuals and organizations in the SCD community, including SCDAA.

In a letter on her website, KiKi says that her advocacy journey began “when I saw the effect on the family of a personal friend whose brother suffered and died as a result of this terrible disease. The strong desire to combat my shared grief and sense of helplessness led me to offer my services to the Sickle Cell Disease Association of America, Inc. Through this national organization, I was introduced to SCD families across America and was able to interact with many patients whose bodies and minds are ravaged by this disease.”

KiKi worked closely with SCDAA until she founded her own organization in the mid-2000s. She served as the moderator of the Lonzie Lee Jones Symposium at the 38th Annual National Convention in 2010 and remained active in the SCD advocacy space throughout her life.

According to a statement released by her family, “KiKi believed that compassion, community and education could change lives. Her voice uplifted countless individuals who often felt unseen, and her work created lasting pathways for hope, resources and understanding for those living with this disease.”

Thank you, KiKi, for your commitment to our cause. We send our sincere condolences to her friends and family for their loss.

SCDAA names Folk-Nagua to board

The Sickle Cell Disease Association of America Inc., a national nonprofit membership organization that advocates for people affected by sickle cell disease, named Krystal Folk-Nagua to the association’s board of directors. Folk-Nagua brings experience as a social work leader, advocate and individual living with sickle cell disease. 

She serves as senior director of programs at Girls for Gender Equity in Brooklyn, New York, where she leads initiatives that merge healing justice, abolitionist social work and youth leadership. In addition, she recruits, trains and supervises youth organizers and social work interns. Previously, she directed social work for charter schools in New York City and served as an adolescent and family therapist. 

Folk-Nagua holds a doctorate in clinical social welfare from New York University’s Silver School of Social Work and a Master of Social Work from Columbia University’s School of Social Work. She has appeared in publications and delivered lectures and trainings. She holds a Bachelor of Social Work from the University of Albany, The State University of New York. 

Thomas L. Johnson continues as the Sickle Cell Disease Association of America Inc. board chair. Adeyinka Ogunlegan was named board vice chair; Ed Flowers was named secretary and Kenneth Thorpe was named treasurer. 

SCDAA Response to National Academies Release of Final Report on Sickle Cell Disease and Social Security Disability Evaluations

On December 9, 2025, the National Academies of Sciences, Engineering, and Medicine (NASEM), released the second and final Sickle Cell Disease in Social Security Disability Evaluations 2025 Report. This report was completed at the request of the Social Security Administration, which tasked NASEM with reviewing the latest published research and science and producing a report on best practices and community experiences in the management and treatment of sickle cell disease. NASEM also released an interim report in June 2025.  

The Sickle Cell Disease Association of America Inc. (SCDAA), and its Medical and Research Advisory Committee (MARAC) strongly support the report’s conclusions and are eager to work with the Social Security Administration to implement appropriate and needed changes to the current Social Security disability criteria for sickle cell disease. 

This final report recognizes the broad variation in sickle cell disease and its complications as well as approaches to both acute and chronic pain management, highlighting that, for a number of reasons, pain is often managed at home or in a variety of outpatient care settings. The report’s important conclusions include: 

“There is an opportunity to improve the accuracy in the determination of disability by considering the broad variability in sickle cell disease complications and approaches to both acute and chronic pain management in a variety of settings…” 

“The frequency of sickle cell disease treatment encounters for acute complications, such as pain crises, in the emergency department and inpatient settings … is too restrictive a measure of disease severity. Growing use of alternative models of care has enabled similar levels of care in outpatient or home settings.” 

Additionally, the NASEM Report provides “overarching conclusions” related to the: 

  • full spectrum of pain and the variation in how it is experienced individuals living with SCD
  • lack of access to coordinated care
  • significant issues in transitioning from adolescence to adulthood in care, treatment and disability eligibility

The NASEM conclusions provide SCDAA and MARAC with justification to advocate for changes to the current disability criteria for sickle cell disease. 

Individuals with sickle cell disease face barriers when applying for Social Security disability and are often denied because of the overly restrictive criteria. The findings and conclusions made by this important report will enable the sickle cell disease community to initiate much needed changes.   

Sickle cell disease is a rare inherited blood disease causing red blood cells to take a sickle shape, which leads to blockages that prevent blood from reaching parts of the body. As a result, people with sickle cell complications can experience anemia, jaundice, gallstones, stroke, chronic pain, organ damage and premature death. No universal cure exists. 

Sickle Cell Disease Association of America Inc. advocates for people affected by sickle cell conditions and empowers community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure. The association and more than 55 member organizations support sickle cell research, public and professional health education and patient and community services. (www.sicklecelldisease.org) 

SCDAA Receives the ASH Outstanding Service Award

SCDAA was honored to receive the Outstanding Service Award during the American Society of Hematology’s 67th ASH Annual Meeting and Exposition. The award recognizes individuals or organizations in the public or private sector who have displayed effective behind-the-scenes leadership in areas relevant to the mission of the American Society of Hematology. Congratulations to our fellow awardees, including SCDAA member organization Sick Cells and the Sickle Cell Community Consortium. Read more.

Hear SCDAA President and CEO Regina Hartfield’s acceptance speech.

MARAC Statement: Pfizer Inclacumab Announcement

August 15, 2025 – In a statement issued today, Pfizer announced the results of their Phase 3 THRIVE-131 study evaluating inclacumab. Although inclacumab was generally well tolerated in THRIVE-131, the study results concluded that inclacumab “did not meet its primary endpoint of significant reduction in the rate of vaso-occlusive crises (VOCs) in participants receiving inclacumab versus placebo every 12 weeks.” The Medical and Research Advisory Committee (MARAC) of the Sickle Cell Disease Association of America, Inc. (SCDAA) would like to express its disappointment in hearing this news. While we recognize that not all therapies will be approved, this report does present a setback to the sickle cell disease community. It underscores the need for further research and clinical trials to find a universal cure for this rare disease.

Sickle cell disease (SCD) is a rare condition that affects over 100,000 Americans and millions across the world. Progress has been made in the treatment of the disease since the approval of hydroxyurea 1997 but it has been slow and far and few between. In addition to hydroxyurea, only two other medications are currently available to treat sickle cell patients: L- glutamine and crizanlizumab. These disease modifying therapies have successfully addressed such major complications as acute pain crisis and acute chest syndrome, among others. Still individuals continue to report issues such as fatigue, chronic pain and other symptoms that result in poor quality of life. Recently approved cell and gene therapies are available and are potentially curative but are costly and require a significant time commitment for the transplant procedure.

MARAC recognizes that while the Pfizer study did not achieve the anticipated outcomes, we applaud those individuals who participated in this and other in clinical trials. Had the therapy achieved its primary clinical trial endpoint, it would have been promising. MARAC encourages the pharmaceutical industry and the Food and Drug Administration (FDA) to work with the sickle cell community to continue to search for therapies that not only address the clinical outcomes often evaluated in sickle cell studies but also explore outcome measures and endpoints that address patient-reported outcomes that impact quality of life.

SCDAA has also joined with a community of sickle cell disease advocacy organizations with this response.

SCDAA’s CHW Training Program Accredited by Maryland

Exciting News: the Maryland Department of Health has officially accredited SCDAA’s Community Health Worker Training! This accolade will allow our program to have an even bigger impact in the state. Students who have successfully completed our training program can now apply for CHW certification with the Maryland Department of Health. Congrats to our CHW team on this accomplishment!

P.O.W.E.R. CHW Award Nominations are Now Open!

Each year during the SCDAA Annual National Convention, we recognize the amazing work performed by community health workers (CHWs) with the SCDAA P.O.W.E.R. CHW Award. The CHW Award honors exemplary performance by individuals who have been identified by their supervisors and peers as having consistently excelled in their positions and demonstrated integrity and a strong commitment to the sickle cell disease (SCD) community and values of the community health worker profession.

If you would like to nominate a CHW for the award, please fill out the below document and submit to the SCDAA Senior Community Impact & Engagement Manager Kevin Amado at kamado@sicklecelldisease.org. The deadline for submission is Friday, August 29.