SCDAA 53rd Annual Convention Program Book

S I C K L E

C E L L

D I S E A S E

A S S O C I AT I O N

O F

A M E R I C A ,

I N C .

53RD ANNUAL NATIONAL CONVENTION

EMPOWERMENT:

F O R G I N G A H E A D W I T H S T R E N G T H A N D C O U R AG E

O C T O B E R 15-18, 2025 LO E W S - C H I C AG O O ’ H A R E H O T E L 530 0 N O RT H R I V E R R OA D • R O S E M O N T, I L L I N O I S

Image of Chicago O’Hare Airport

Legacy Sponsor

®

“I never asked for this. I never wished for pain, or sickness, or fear. But maybe I was chosen for a reason, chosen to bear the weight of sickle cell—not as a punishment, but as an opportunity. Maybe my story will make an impact on someone’s life.”

—Markus, sickle cell warrior

You are more than sickle cell.

Seeing isn’t just believing—it’s understanding.

In a world where people living with sickle cell are often defined by their condition, Pfizer continues to help support the fight against sickle cell.

Scan the QR code to see how Pfizer is showing up.

Legacy Sponsor

2

PP-LTV-USA-3412 © 2025 Pfizer Inc. All rights reserved.

September 2025

National Staff ................................................................ 4

TA B L E O F CONTENTS

President’s Greeting....................................................... 5 Chief Medical Officer’s Greeting................................. 6 Convention Committee.................................................. 8 SCDAA Board of Directors........................................... 9 Advisory Board............................................................10 Who We Are.................................................................11 MARAC Members....................................................... 12 Abstract Reviewers....................................................... 14 National Highlights...................................................... 16 SCDAA Abstract Submissions to FSCDR....................23 Honor Lectures.............................................................24 Advocacy Update....................................................... 31 Lennette Benjamin, MD, Memorial Panel..................32 Clinical Trial Summit.....................................................33 Lonzie Lee Jones Symposium......................................34 SCDAA Masterclass....................................................35 Awards..........................................................................36 SCDAA Members........................................................42 SCD C.A.R.E.S. Consortium Members.......................46

FOLLOW US!

Ways to Give...............................................................47 Our Sponsors...............................................................48

@scdaa @SCDAAorg facebook.com/ sicklecellcampaign linkedin.com/ company/scdaa-national

®

Privacy & Proprietary Information Notice: Please be aware that livestreaming, filming, videotaping, recording, reproducing or copying convention sessions in any format is prohibited.

3

N AT I O N A L STA F F

EMPOWERMENT:

F O R G I N G A H E A D W I T H S T R E N G T H A N D C O U R AG E

Regina Hartfield President/Chief Executive Officer

Reginald Hart, Jr. Chief Financial Officer

Erika Cartledge Director of Development and Stakeholder Engagement

Kevin Amado, MPA Senior Community Impact and Education Manager

Natasha Thomas Events and Special Projects Manager

Joel Nepomuceno Membership Engagement Manager

Teaira Brown Staff Accountant

®

O U R M I SS I O N To advocate for people affected by sickle cell conditions and empower community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure.

Phoelicia Blagmon Executive Assistant PUBLISHER:

Sickle Cell Disease Association of America, Inc. EDITOR AND GRAPHIC DESIGN:

7240 Parkway Drive, Suite 180

Bonnie Heneson Communications, Inc.

Hanover, MD 21076 410.528.1555 (office) | 410.528.1495 (fax) info@sicklecelldisease.org | sicklecelldisease.org

4

P R E S I D E N T ’S G R E E T I N G

Dear Friend: The Sickle Cell Disease Association of America, Inc. (SCDAA) is thrilled you are joining us at our 53rd Annual Convention: EMPOWERMENT: Forging Ahead with Strength and Courage. We are so excited that this year’s convention is in-person at the Loews Chicago O’Hare Hotel in Rosemont, Illinois.

The title of this year’s Convention embodies the very attributes that have historically paved the way to discovery and innovation in sickle cell disease treatment and management. They encompass the strength that enabled the critical decision to enroll in an SCD clinical trial. Or the courage to talk with loved ones and their health care provider about forging ahead with bone marrow or gene therapy. Or the empowerment to stay the course of a disease modifying treatment that works for them.

The content of the sessions, speakers and topics that comprise this year’s program, is also a reflection of title, as we bring together those living with SCD and their caregivers, colleagues in the advocacy world, medical and allied professionals and researchers, pharmaceutical leaders, legislators, partners and supporters, our community-based organizations and the public at large.

We are excited to initiate a new opportunity for our member organizations to further build their capacity. The SCDAA Leadership Intensive offers a special leadership series just for our member organizations. The three sessions are offered on Wednesday, October 15 and augment the sessions held throughout the Convention.

So come early and sharpen your leadership skills!

And last, but not least, join us for an evening of elegance and comradery at the SCDAA Gala. This year’s theme is the Roaring ’20s, and it’s your time to sparkle and shine.

SCDAA’s 53rd Annual Convention features world renowned sickle cell disease experts who share their research, insights, patient-driven outcomes, investigator prospectives, clinical expertise, training and lived experiences to create a convention uniquely its own.

If this is your first time joining us, welcome. If you are a returning attendee, welcome back!

Regina Hartfield President & CEO Sickle Cell Disease Association of America, Inc.

5

C H I E F M E D I C A L O F F I C E R ’S G R E E T I N G

Thank you for attending this year’s Sickle Cell Disease Association of America’s 53rd Annual National Convention, “Empowerment: Forging Ahead with Strength and Courage.”

This past year has presented the sickle cell disease community with several challenges. We saw therapies removed from the market and research protocols ended. The events have left many warriors with concerns about the future of therapeutic treatments. SCDAA worked with the Medical and Research Advisory Committee (MARAC) to swiftly deliver recommendations and advice.

The new administration announced changes that will have a lasting impact on the ability of the sickle cell community to access care. Changes in the federal government brought a reduction in staff who were critical in helping to implement programs that defined advancements in sickle cell disease over the past 30 years. Changes to Medicaid will make it harder for individuals to obtain and keep health insurance.

Fortunately, the Centers for Medicare and Medicaid Innovation’s (CMMI) new Cell and Gene Therapy Access Model was continued, and 33 states, along with the District of Columbia and Puerto Rico, representing 84% of Medicaid beneficiaries with SCD, are participating in the program. The community also welcomed the news of the continuation of the Health Resources and Services Administration (HRSA) Sickle Cell Disease Treatment Demonstration Program and the Centers for Disease Control and Prevention (CDC) programs.

While these challenges are significant, the community remains committed to facing them with strength, courage and resiliency.

SCDAA is proud to work with the community and partners to continue to fight for improving sickle cell care. Throughout 6

2025, MARAC and SCDAA served as a resource to national media and reached over 213 million visitors. MARAC received frequent updates on developments at the federal level, including changes to SCD programs, as well as programs that affect the broader community.

We know that knowledge can bring empowerment, and SCDAA and MARAC will continue to provide a voice for the sickle cell community. We will continue to develop resources, advisories and recommendations to aid in the community’s understanding of the changes that will take place to Medicaid.

MARAC will also monitor vaccination recommendations coming from the CDC and inform the health care and warrior communities of ways to ensure that patients and their families are protected from infections.

SCDAA is working with federal partners to find more effective ways to evaluate therapies, report outcomes from research and communicate with the sickle cell community as different platforms for communication impact where and how information is disseminated and to whom.

SCDAA and MARAC are taking the necessary steps to empower the sickle cell community to face the challenges of the future. We know that waiting for someone else to address these challenges for us is not an option. Please join me, Vice Chief Medical Officer Dr. Crawford Strunk, MARAC and SCDAA in continuing to empower the community to meet these challenges with strength, courage and hope for a brighter future in sickle cell disease.

Edward Donnell Ivy, MD, MPH Chief Medical Officer Sickle Cell Disease Association of America, Inc.

sickle cell disease association of america, inc. invites you to a

ROARING '20s GOOD TIME

GALA CELEBRATION Friday, October 17 cocktail reception 6:30 p.m. | Avedon CD lobby gala 7:30 p.m. | Avedon CD Loews-Chicago O’Hare Hotel Join us for a fun-filled evening of dinner and dancing.

Dress your '20s best!

Legacy Sponsor

®

7

T H A N K YO U TO O U R C OM M I T T E E S

EMPOWERMENT SCDAA thanks the members of the Convention Planning Committee for the many hours they spent and the commitment they made to bring this wonderful event to fruition.

CONVENTION PLANNING COMMITTEE:

Mary LaMar Bentley Raffaella Colombatti, MD, PhD

CONVENTION PLANNING C OM M I T T E E C H A I R S

Melissa Creary, PhD, MPH Reginald Hart, Jr. Regina Hartfield TaLana Hughes, MPH Baba Inusa, MD Edward Donnell Ivy, MD, MPH Genice Nelson, DNP, APRN, ANP-BC Wanda Whitten-Shurney, MD Natasha Thomas Kenneth Thorpe, PhD, MA Annie Ross Womack Lewis Hsu, MD, PhD

8

Kim Smith-Whitley, MD Crawford Strunk, MD

M E E T O U R B OA R D O F D I R E C T O R S

Thomas L. Johnson, JD Chair of the Board and Treasurer Executive Director ASAP 340B Washington, DC

Bobby Staten III Vice Chair Principal Solutions Architect Appleseed Consulting Atlanta, GA

Adeyinka Ogunlegan, Esq. Board Secretary Chief of Staff & Vice President Federal Affairs National Urban League Washington, D.C.

Edward Donnell Ivy, MD, MPH Chief Medical Officer Education Coordinator Sickle Cell Awareness Group of Ontario North York, ON

Crawford J. Strunk, MD Vice Chief Medical Officer Pediatric Hematologist-Oncologist Cleveland Clinic Cleveland, OH

Melissa Creary, PhD, MPH Assistant Professor, Health Management and Policy School of Public Health University of Michigan Ann Arbor, MI

Ed Flowers Managing Partner & CHRO Practice Leader and Executive Committee Member DHR Global Atlanta, GA

TaLana Hill-Hughes, MPH Executive Director Sickle Cell Disease Association of Illinois Chicago, IL

Christopher Hollins, MBA Executive Vice President Strategic Acquiring Partnerships WorldPay, Inc. Atlanta, GA Continued on next page.

9

M E E T O U R B OA R D O F D I R E C T O R S

10

Lewis Hsu, MD, PhD Director, Pediatric Sickle Cell Center and Professor of Pediatrics Pediatric Hematologist University of Illinois at Chicago Chicago, IL

Katherine Napier, EDB, CPA, MBA, CISA, CIA Senior Vice President for Finance/ Chief Financial Officer Morehouse School of Medicine Atlanta, GA

Crystal A. Riley, PharmD, MHA, MBA Deputy Director/Government Policy Baxter International, Inc. Washington, DC

Kenneth Thorpe, PhD, MA Robert W. Woodruff Professor and Chair, Department of Health Policy and Management Rollins School of Public Health Emory University Atlanta, GA

JaKela Walker Sr. Finance Director & Regional Finance Lead dsm-firmenich Exton, PA

Kim Smith-Whitley, MD CMAO RWE, Patient Advocacy and External Collaboration Pfizer San Francisco, CA

A DV I S O RY B OA R D

Chris Ruffin, Jr. Executive Producer WJXT News 4 Jacksonville

Krystal Folk-Nagua, DSW Senior Director of Programs Girls for Gender Equity

David Braxton Senior Vice President Bank of America

Tanesha Johnson Assistant Professor University of Kentucky

A. Kyle Mack, MD Medical Principal Cigna Healthcare

Kimberly Clare Manager, Accounting Controls and Compliance American-Speech-Language-Hearing Association (ASHA)

Carol McFarland Director of Development, University Strategic Initiatives Howard University

Genice T. Nelson, DNP, APRN, ANP-BC Program Director, New England Sickle Cell Institute and Connecticut Bleeding Disorders Programs UConn Health

WE SERVE as the national voice

for SCD working to resolve issues surrounding sickle cell disease and sickle cell trait. Since 1972, the organization has been on the forefront of improving the quality of health, life and services for individuals, families and communities affected by this rare disease and related conditions.

WE PROMOTE the search for a

universal cure for all people in the world with sickle cell disease.

WE JOIN with our 57 member

organizations and affiliates located in 30 states to collectively serve over 500,000 children and adults living with or impacted by sickle cell disease and their families and caregivers.

THIS IS WHO WE ARE M O R E I M P O R TA N T LY THIS IS WHAT WE DO

WE CONNECT SCD warriors to our Clinical Trial Finder — a centralized, simple-to-navigate website to help people with sickle cell disease, their families and caregivers find clinical trials: sicklecelldisease.org/clinical-trial-finder.

WE TRAIN hundreds of Community Health Workers (CHWs) across the nation to assist families, helping to manage their health care strategy and access to care.

WE ADVISE on current medical news affecting you through SCDAA’s Medical and Research Advisory Committee (MARAC). The committee, comprised of world-renowned SCD experts, provides vital disease, clinical trial and therapy updates as they happen.

WE LEAD by building leadership skills. The Leadership Academy helps community-based organizations and SCD professionals become even more productive, with capacity building and up-to-date information.

WE EDUCATE throughout the year by holding our Masterclass Series as well as our Annual

National Convention to foster the exchange of the latest scientific and clinical information through innovative training seminars and educational workshops, interactive panel discussions, advocacy lectures and special events.

WE ADVOCATE so SCD warriors and families know they are not alone. Together with our member organizations, we have created a strong network that includes caregivers, clinicians, stakeholders and experts.

WE PARTNER together with organizations like the American Red Cross to conduct blood drives and raise awareness. sicklecelldisease.org 11

EMPOWERMENT:

F O R G I N G A H E A D W I T H S T R E N G T H A N D C O U R AG E

MEDICAL AND RESEARCH A D V I S O R Y COM M I T T E E M E M B E R S Miguel R. Abboud, MD, PhD Professor of Pediatrics and Pediatric Hematology-Oncology Chairman Department of Pediatrics and Adolescent Medicine American University of Beirut, Lebanon Melissa Creary, PhD, MPH Assistant Professor, Health Management and Policy School of Public Health University of Michigan Ann Arbor, MI Lori Crosby, PsyD Co-Director, Innovations in Community Research, Division of Behavioral Medicine & Clinical Psychology Co-Director, CCTST, Community Engagement Core Psychologist, Research, Behavioral Medicine & Clinical Psychologist Cincinnati Children’s Professor, UC Department of Pediatrics Cincinnati, Ohio James Eckman, MD Professor Emeritus, Hematology & Medical Oncology Emory University School of Medicine Department of Hematology and Medical Oncology Atlanta, Georgia

12

Lewis Hsu, MD, PhD Chair, Medical and Research Advisory Committee, Sickle Cell Disease Association of America Interim Chief of Pediatric Hematology-Oncology Director of Pediatric Sickle Cell Center Professor of Pediatric Hematology-Oncology University of Illinois at Chicago Chicago, Illinois Edward Donnell Ivy, MD, MPH Chief Medical Officer, Sickle Cell Disease Association of America Education Coordinator Sickle Cell Awareness Group of Ontario North York, ON Elizabeth Klings, MD Associate Professor of Medicine Director, Center for Excellence in Sickle Cell Disease Director, Pulmonary Hypertension Center Boston University School of Medicine Boston, Massachusetts Lakshmanan Krishnamurti, MD Professor of Pediatrics Chief of Pediatric Hematology, Oncology, and Bone Marrow Transplant Yale University New Haven, Connecticut

Sophie Lanzkron, MD Professor of Medicine Director, Division of Hematology-Cardeza Foundation for Hematologic Research Honickman Center Philadelphia, Pennsylvania

Crawford J. Strunk, MD Vice Chief Medical Officer, Sickle Cell Disease Association of America Co-Director, Sickle Cell Medical Neighborhood Cleveland Clinic Cleveland, Ohio

Julie Makani, FRCP, PhD Associate Professor Department of Haematology and Blood Transfusion Muhimbili University of Health and Allied Sciences Dar es Salaam, Tanzania

Julie Kanter-Washko, MD Associate Professor, Division of Hematology Oncology Director, Adult Sickle Cell Clinic University of Alabama at Birmingham Birmingham, Alabama

Caterina P. Minniti, MD Consulting Hematologist Former Director, Sickle Cell Center Montefiore Health System Bronx, New York

Wanda Whitten-Shurney, MD CEO and Medical Director Sickle Cell Disease Association of America, Michigan Chapter, Inc. Detroit, Michigan

Genice T. Nelson, DNP, APRN, ANP-BC Program Director, New England Sickle Cell Institute and Connecticut Bleeding Disorders Programs UConn Health, Farmington, Connecticut Advisory Board Member, Sickle Cell Disease Association of America, Inc.

13

T H A N K YO U T O O U R A B ST R AC T R E V I E W E R S The Sickle Cell Disease Association of America, Inc., thanks everyone who reviewed this year’s research paper abstract submissions: Sonali Chaudhury, MD

Gabrielle Lapping-Carr, MD

Deepika Darbari, MD

Enrico Novelli, MD, MS

Laura DeCastro, MD

Radhika Peddinti, MD

James Eckman, MD

Shannon Phillips, RN, PhD

Marwah Farooqui, MD

Santosh Saraf, MD

Beatrice Gee, MD

Kay Saving, MD

Victor Gordeuk, MD

Lisa Shook-Chiles, DHPE, MA, MCHES, CCP

Nancy Green, MD

Wally Smith, MD

Kisha Hampton, MPH

Crawford J. Strunk, MD

André Harris, MSW

Paula Tanabe, PhD

Lewis Hsu, MD, PhD

Wanda Whitten-Shurney, MD

Edward Donnell Ivy, MD, MPH

Gentry Wilkerson, MD

Sara Jacobs, MD

Katherine Wood, PhD

Elizabeth Klings, MD

14

See our impact at www.agios.com

Golie, living with Sickle Cell Disease

Every patient story shapes our science.

Every rare disease community has a voice, and we’re listening. Because by truly understanding, we’re able to develop and deliver innovative medicines that have the potential to transform lives.

Connect with us at www.agios.com Agios.com/Contact 1-877-772-4467 LinkedIn.com/Company/Agios @AgiosPharma Instagram.com/allyvoicesrising The person shown is a real patient who has been compensated for their time.

Fueled by Connections to Transform Rare Diseases

TM

15

N AT I O N A L H I G H L I G H T S A

A YEAR IN REVIEW

SPECIALIZED PROGRAMMING The Sickle Cell Disease Masterclass Following another successful year, SCDAA was proud to continue bringing important conversations to the forefront with our masterclass series. The livestreamed series helps SCD warriors, caregivers, providers and others understand new perspectives on SCD and its treatment.

The masterclass is sponsored by Pfizer.

2025 sessions included: The Current State of Sickle Cell Disease Treatments: Pipelines or Pipe Dreams?

In this April 2025 session, our panel of experts and warriors explored the progress we have made, the setbacks we have experienced and the future of sickle cell disease.

Sickle Cell in the Media: Scene and Heard Held at the annual convention in-person in October 2025, this class offers a panel discussion with industry experts and warriors that explored the portrayal of sickle cell warriors in film and television as well as its impact on the public’s perception of sickle cell disease. The session was hosted by Agios Cheat Codes.

®

Sickle Cell Disease Association of America, Inc. presents an

SCD MASTERCLASS

Sickle Cell in the Media: Scene and Heard Hosted by

Cheat Codes

SATURDAY, OCTOBER 18 | 10:15 A.M. CT at the SCDAA 53rd Annual National Convention 16

Loews Chicago-Ohare Hotel | Avedon CD Room Join us for this panel discussion where we will explore the portrayal of sickle cell warriors in film and television, and its impact on the

N AT I O N A L H I G H L I G H T S

ADVOCACY On the Hill SCDAA’s 2025 in-person Advocacy Days were a huge success! In May representatives from 18 SCDAA member organizations across 13 different states traveled to Washington, D.C., to meet with members of Congress and their staff to talk about issues impacting the SCD community. This year’s meetings focused on the importance of Medicaid to the sickle cell disease community. Attendees also provided information on sickle cell disease federal programs and asked that these be maintained at current funding levels for fiscal year (FY) 2026. Offices were asked to support the Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act (H.R. 1796/S. 735), which would reauthorize the Health Resources and Services Administration’s (HRSA) Sickle Cell Disease Treatment Demonstration Program.

A DVO C AC Y DAYS

BY T H E N U M B E R S 34 attendees from 13 states represented 18 SCDAA Member Organizations and the National Office

50+ Congressional meetings held with Republican and Democratic offices

RESULTS: Advocacy efforts helped move the needle on Medicaid cuts

17

N AT I O N A L H I G H L I G H T S Cell and Gene Therapy Access Model On July 15, 2025, the Centers for Medicare and Medicaid Services (CMS) announced that 33 states, along with the District of Columbia and Puerto Rico, will be participating in the Cell and Gene Therapy (CGT) Access Model. The CGT Access Model provides participating state Medicaid plans with access to gene therapies at rates negotiated by CMS. “The Sickle Cell Disease Association of America, Inc., is excited by the news that CMS has reached agreements with drug manufacturers to provide gene therapies to treat sickle cell disease to Medicaid recipients and that 33 states, plus the District of Columbia and Puerto Rico, have joined a program that ties Medicaid payments to patient outcomes,” says Dr. Edward Donnell Ivy, SCDAA chief medical officer. “For a long time, the only disease-modifying therapy for sickle cell disease was hydroxyurea, which doesn’t work for many sickle cell patients and leaves the community with limited options for care. The new gene therapies, that were approved by the FDA in 2023, will allow individuals the opportunity for transformative therapy with potential cure. However, access to this new therapy might be limited by the cost of the treatment, so it is important for CMS and other stakeholders to get involved in ensuring access to this therapy, particularly since it has been demonstrated that a large portion of the sickle cell population relies on Medicaid for access to care.”

EVENTS February 2025: SCDAA Open House SCDAA was thrilled to welcome representatives from our member organizations to our offices in Hanover, Maryland, for our Second Annual Open House. During our time together, we worked on brainstorming and planning for the year ahead.

Our member organizations are our boots on the ground in communities across the country, and we would be unable to fulfill our mission without without the work they do.

June 2025: World Sickle Cell Day and Summer Sickletini SCDAA joined the Global Alliance of Sickle Cell Disease Organizations (GASCDO) in recognizing the 2025 theme Global Action, Local Impact: Empowering Communities for Effective Self-Advocacy. In recognition of World Sickle Cell Day, SCDAA hosted a SickleTini Summer Happy Hour on June 19, in person in Baltimore, Maryland. Guests came together to enjoy food and music and to shine a light on sickle cell disease.

18

N AT I O N A L H I G H L I G H T S July 2025

SCDAA Warrior Walkathon Warriors, caregivers and advocates gathered in Baltimore, Maryland, to celebrate our community’s resilience and #MoveForSickleCell. The event included an instructor-led warmup, a walk along the water and lots of fun! Thank you to all the teams that joined us and helped raise crucial funds in support of SCDAA.

Touring Howard University Hospital’s Center for Sickle Cell Disease The SCDAA National Office staff took a tour of Howard University Hospital’s Center for Sickle Cell Disease with the center’s Director, Dr. James Taylor, and learned more about its mission. The center serves hundreds of sickle cell warriors in the Washington, D.C., area. In its new and improved space, the center has increased its capacity to provide needed care in a comfortable setting.

19

N AT I O N A L H I G H L I G H T S September 2025: Celebrating Sickle Cell Awareness Month

SCDAA

Inaugural Golf Classic The SCDAA Inaugural Golf Classic was held on a beautiful day in September at Chapel Hills Golf Club in Douglasville, Georgia, and was a success! The first golf fundraiser for SCDAA will not be the last!

GOLF CLASSIC SCDAA

GOLF CLASSIC

SCD C.A.R.E.S. CONSORTIUM

We continued to educate about the importance of clinical trials through the work of the SCD C.A.R.E.S. (Collaboration of Advocates for Research, Education and Science) Consortium.

• Our clinical trial finder continued to connect warriors and caregivers with clinical trial opportunities near them.

• This year we launched a series of videos highlighting our clinical trial heroes who helped blaze the trail for research and hope. This public service campaign is being shared to help educate others and encourage clinical trial participation.

. m S . u E i S .R. t r o A s .

C Con D C

or f s e e c t C.A.R.E.S. n ca cie o Consortium v dS d f A n an me o A e n tio th of o f i o ion a t e c a v r du iat ti o c a i it sso sicklecelldisease.org/clinical-trial-finder ab E n i , l l n se A h o A c C ear ea s i s ll D e e R C le SCD

Collaboration of Advocates for Research, Education and Science

An initiative of the Sickle Cell Disease Association of America

k Sic

20

N AT I O N A L H I G H L I G H T S MEDICAL AND RESEARCH ADVISORY COMMITTEE (MARAC) SCDAA’s MARAC monitors emerging and critical research activity and keeps the community apprised of important information. Advisories were produced to respond to health news including: • MARAC Statement: ASH Report on Exercise and SCT Crisis Risk (February 2025) • MARAC Statement: Pfizer Inclacumab Announcement (August 2025)

KEEPING SICKLE CELL DISEASE IN THE MEDIA SCDAA provided experts to national media as well as landed appearances in local and industry publications.

13 million visitors

34.2 million visitors

Rare Revolution Magazine

Sickle Cell News

58.1 million visitors Dr. Crawford Strunk, vice chief medical officer, contributed an extensive, clinical article about gene therapy to the Catholic Health Association’s Health Progress, a health care industry publication.

Combined national reach, including affiliate pickups:

Over 213.3 million visitors

“There’s a lot of interest and a lot of hope,” Dr. Edward Donnell Ivy, chief medical officer, told Newsweek. “We’re at the dawn of a new age for sickle cell disease.”

New Wave of Potentially Curative Treatment Offers Hope for Sickle Cell Disease: How Can We Eliminate Hurdles to Build on the Promise?

CRAWFORD STRUNK, MD Vice Chief Medical Officer, Sickle Cell Disease Association of America and Associate Medical Staff, Cleveland Clinic Foundation

I “These advancements in treatment are exciting and life-changing for those who can access them. ... But, for many individual patients, it does not change the day-to-day reality of living with sickle cell disease. Pain is pain, and it’s worse when it’s an uphill battle to find relief.”

n December 2023, more than 100,000 people in the U.S. affected by sickle cell disease received what was poised to be life-changing news: The first potentially curative gene therapies were officially approved by the U.S. Food and Drug Administration for the treatment of sickle cell disease. The sigh of relief at this new long-term treatment option was followed by a sense of widespread apprehension. With price tags in the millions, those who needed it most wondered how they could afford it. Health care systems looking to implement these therapies were entering uncharted territory. There was a new, incredible tool at our fingertips. The question was: How do we use it?

Gene therapy entered an already complicated treatment space. Since sickle cell disease was first described in medical literature in 1910, it has been a challenge to procure funding for research and development, overcome barriers to access and properly educate health care teams to provide consistent quality care. Understanding the difficulties faced by new advances like gene therapy — and discovering the solutions to those problems — starts by looking at the past.

SICKLE CELL DISEASE: A (SOMETIMES PAINFUL) HISTORY

Sickle cell disease is a rare, inherited blood disorder that disproportionately affects the Black community, but occurs in all ethnicities. It causes chronic, often excruciating, pain, along with complications in every organ system from head to toe.

HEALTH PROGRESS

The average life expectancy for someone with sickle cell disease is 20 years shorter than that of the general population; however, with current therapy, more than 98% of people living with the condition reach adulthood.1 Even though it is the most common genetic disorder worldwide,2 in the United States, it has historically received less attention than other rare diseases. In fact, a nationwide approach to improving care and treatment was not put into place until Congress passed the National Sickle Cell Disease Control Act of 1972. This act formed the National Sickle Cell Disease Program of the National Heart, Lung and Blood Institute (NHLBI) of the National Institutes of Health and called for the establishment of federally funded comprehensive sickle cell centers.3 This important bill created the necessary foundation to which we owe a great deal of

www.chausa.org

SUMMER 2025

47

21

N AT I O N A L H I G H L I G H T S

TH 10 Anniversary

PREPARING COMMUNITY HEALTH WORKERS TO SERVE THE COMMUNITY SCDAA’s National Community Health Worker (CHW) Training Program continues to function as an instructor-led, online course. The modules also offer a course specifically designed to help supervisors and managers learn how to provide high-quality supervision to CHWs. Over the past year, SCDAA added an additional session in the summer and trained 20 individuals to date as CHWs to support sickle cell warriors.

The P.O.W.E.R. ECHO CHW Training also provides continuing education to CHWs and advocates seeking to expand and deepen their knowledge. These free, virtual classes help us raise awareness and provide guidance on issues related to SCD. In total, 22 people joined us for the P.O.W.E.R. ECHO training this year.

2025 brought much to celebrate including the 10th anniversary of the SCDAA CHW program. In July 2025, the Maryland Department of Health 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.

22

C O N G R AT U L AT I O N S FS C D R A B ST R AC T W I N N E R S Congratulations to the following SCDAA abstract winners whose research was also recently submitted for consideration for publication in the Foundation of Sickle Cell Disease Research’s Journal of Sickle Cell Disease: Community Leads the Way: The Role of CBO–Hospital Partnerships in Strengthening Hydroxyurea Uptake and Sickle Cell Disease Care - Candice Dele CBOs Deliver the Support — Who Delivers the Science? Why CBOs Need Research Partners, Not Just Gratitude - Kenneth Rivlin Fighting Sickle Cell with Every Bite: Tackling Food Deserts to Reduce Crises and Save Lives - La’Shardae Scott Reflection of Hospital Care Experiences from Patients with SCD in Ontario - Lanre Tunji-Ajayi Value of a Sustained Multidisciplinary Advisory Group in Advancing Sickle Cell Care and Research - Ifeanyi Chukwudozie Enhancing Educational Equity for Students with Sickle Cell Disease: A Longitudinal Evaluation of a Secure Communication System, Barriers to Access, and Interest-Driven Academic Support (2020-2025) - Kaitlin Murtagh Exploring the Role of Complementary and Alternative Medicine in Sickle Cell Disease Pain Management: A Literature Review - Fatmata Barrie The Impact of Social Determinants of Health on The Clinical and Economic Outcomes in Sickle Cell Disease: A Systematic Review - Elnara Fazio-Eynullayeva Acceptability and Feasibility of a Shared Decision-Making Intervention for Adolescents and Young Adults with Sickle Cell Disease - Aimee Hildenbrand Strength in Silence: The Invisible Burdens of Caregivers of Adults with Sickle Cell Disease - Persis Ayeh Nursing Without Borders: Culturally Tailoring a US SCD Nursing Excellence Train-The-Trainer Bootcamp Model for Nurses in Nigeria and Across Africa - Stephanie Ibemere

23

HONOR LECTURES

CHARLES F. WHITTEN, MD

The Charles F. Whitten, MD, Memorial and Clarice D. Reid, MD, lectures are given annually at SCDAA’s National Convention.

Their collective careers represent over a century of involvement in the research, education, clinical care, program and policy development and advocacy of sickle cell disease.

Their combined legacies continue to provide inspiration to countless scientists and clinicians as well community and public health practitioners.

Sickle Cell Disease Association of America, Inc., honors them by honoring others, in their name, who have made significant contributions to the sickle cell community.

CHARLES F. WHITTEN, MD, was a pioneer pediatric hematologist and a national leader whose vision and determination transformed SCD clinical care and policy. Dr. Whitten completed his medical degree at Meharry Medical College, a residency in pediatrics at the Children’s Hospital of Buffalo and a fellowship in hematology at the Children’s Hospital of Michigan. He joined the Wayne State University (WSU) School of Medicine, initially serving as chief of pediatrics at Detroit Receiving Hospital and had the distinction of being the first African American to head a department in a Detroit hospital.

He authored over 100 journal articles and seven book chapters.

In 2002, he retired with the title of Distinguished Professor of Pediatrics, Emeritus and was one of only 15 WSU faculty who had earned that rank at the time.

24

Because of his deep concern about the underrepresentation of African American physicians, in 1969, he launched the Post Baccalaureate Program at the Wayne State University School of Medicine, the first of its kind in the nation that offered intensive preparation, mentorship and support. During his time, Wayne State University College of Medicine graduated more physicians of color than any other medical school except Howard and Meharry.

Dr. Whitten was instrumental in cofounding the National Association for Sickle Cell Disease, now known as the Sickle Cell Disease Association of America, Inc. In Detroit, he established the Sickle Cell Detection and Information Center. He also founded the Sickle Cell Disease Association of America, Michigan Chapter and served as its president until his death. In addition, he directed the WSU Comprehensive Sickle Cell Center Grant for 19 years, advancing both research and clinical care. He was a relentless advocate for newborn screening for sickle cell disease, a practice that is now standard and has saved countless lives.

HONOR LECTURES

CLARICE D. REID, MD

CLARICE D. REID, MD, is a pioneering physician and researcher whose work at the National Institutes of Health (NIH) transformed sickle cell disease research and care. She graduated from the University of Cincinnati College of Medicine as only the third African American to earn a medical degree from the institution.

After beginning her career as a pediatrician, she transitioned into federal service in the early 1970s.

In 1972, Dr. Reid joined the Sickle Cell Screening and Education Clinics within the Health Services and Mental Health Administration (HSMHA), working with the newly established Sickle Cell Screening and Education Clinics. As Deputy Director, she emphasized the importance of community programs in addressing national and local issues related to sickle cell disease and was instrumental in unifying the community service-oriented

programs with the clinical and basic research programs at the NIH. The Director of the NHLBI/NIH recruited Dr. Reid to serve as Acting Chief of the Sickle Cell Disease branch. In 1976, she was appointed Chief of the Branch and the coordinator of the National Sickle Cell Disease Program. For more than twenty years, she led the national program of research and services — a role she describes as her greatest professional accomplishment.

Since her retirement in 1998 as director of the Division of Blood Diseases and Resources at the National Institutes of Health, Dr. Reid has continued to be a prominent figure in her community.

Under her leadership, landmark advances were achieved: The Cooperative Study of Sickle Cell Disease, prophylactic penicillin to prevent infections in infants, hydroxyurea to reduce painful crises in adults and universal newborn screening for sickle cell disease.

Dr. Reid’s career was recognized with many honors, including the Superior Service Award from the U.S. Public Health Service and the Presidential Meritorious Executive Rank Award. She is especially proud of receiving the Assistant Secretary of Health Exceptional Service Medallion and the 2024 SCDAA Lifetime Achievement Award.

25

HONOR LECTURES

KWAKU OHENE-FREMPONG, MD

The Kwaku Ohene-Frempong, MD, Memorial Symposium is given annually at SCDAA’s National Convention.

Dr. Ohene-Frempong also founded the Sickle Cell Foundation of Ghana and was a founding member of the Global Sickle Cell Disease Network.

Dr. Ohene-Frempong passed away in 2022. He was a true leader in the sickle cell community and dedicated his life and career to working with SCD.

His landmark analysis of stroke in the Cooperative Study of Sickle Cell Disease showed the high rates of stroke in children from blocked blood flow and high rates of stroke in adults that were from bleeding aneurysms.

He also pioneered a newborn screening and follow-up program in Kumasi, Ghana, where one in 50 babies have sickle cell disease.

In the United States and internationally, Dr. OheneFrempong was a leading pediatric sickle cell physician and a fierce advocate. His work changed the world for many in our community.

His legacy inspires us and countless others as we push for better treatments, better education and better outcomes for sickle cell warriors.

Sickle Cell Disease Association of America, Inc., is proud to honor his memory by elevating the voices and efforts of those who dare to make a difference.

26

KWAKU OHENE-FREMPONG, MD, was born in Ghana, and his record of excellence as a studentathlete earned him a scholarship to Yale to study pre-med and later, a trip to the Olympics representing Ghana in track and field. He received his medical degree from the Yale School of Medicine in 1975.

While finishing his degree, his son became the first baby diagnosed with sickle cell disease by Dr. Howard Pearson in the pioneering newborn screening program at Yale in 1972. His firsthand experience with sickle cell and newborn testing motivated him to dedicate his life and career to studying and advocating for sickle cell.

Dr. Ohene-Frempong was director emeritus of the Comprehensive Sickle Cell Center at the Children’s Hospital of Philadelphia and professor emeritus of pediatrics at the Perelman School of Medicine at the University of Pennsylvania.

Dr. Ohene-Frempong held many roles on the Sickle Cell Disease Association of America, Inc., board of directors over the years, including chief medical officer, board chair and board member emeritus. He also sat on the SCDAA Medical and Research Advisory Committee.

HONOR LECTURES

2025 CHARLES F. WHITTEN, MD, MEMORIAL LECTURE

Creating Connection and Practice Harmonization Keynote speaker: Julie Kanter, MD Moderator: Wanda Whitten-Shurney, MD Thursday, Oct. 16 | 10:30 a.m.

Avedon CD Julie Kanter, MD, is a professor of medicine and pediatrics at the University of Alabama’s Birmingham School of Medicine. She leads the adult sickle cell disease program and co-leads the Lifespan Comprehensive Sickle Cell Center. Her two main research focuses are advancing novel therapies through improved understanding of biology and clinical endpoints and using dissemination and implementation science to improve access to care in sickle cell disease.

Dr. Kanter has received funding from the NIH/NHLBI, HRSA and the CDC. Dr. Kanter is also the president of the National Alliance of Sickle Cell Centers (NASCC), the first network of sickle cell centers dedicated to reducing barriers and improve access to quality care for people living with sickle cell disease.

27

HONOR LECTURES 2025 KWAKU OHENE-FREMPONG, MD, MEMORIAL SYMPOSIUM

What Cure Leaves Behind: Listening to the Lived Reality of Innovation Keynote speaker: Marilyn S. Baffoe-Bonnie, PhD Moderator: Kim Smith-Whitley, MD Thursday, Oct. 16 | 2 p.m.

Avedon CD Marilyn S. Baffoe-Bonnie, PhD, is a medical sociologist and bioethicist whose work centers on how individuals and communities navigate sickle cell disease in a time of curative promise. She is a postdoctoral fellow in the department of history and sociology of science at the University of Pennsylvania, where she studies the ethical and social dimensions of emerging biomedical technologies, including gene therapy, with a focus on equity, social integration and the lived experience of biomedical innovation.

Dr. Baffoe-Bonnie’s research has been published in Social Science & Medicine, Public Understanding of Science and Bioethics, and she has received national recognition for her work on stakeholder engagement and patient voice in novel therapeutics. She serves on the National Academies of Sciences, Engineering, and Medicine Committee on Sickle Cell Disease in Social Security Disability Evaluations, the NYU Pediatric Gene Therapy and Medical Ethics Working Group and the RBCAX Patient Engagement Subcommittee.

She earned her PhD in sociology from Rutgers University, a master of bioethics from the University of Pennsylvania and completed a predoctoral fellowship at the NIH focused on bioethics and health disparities.

28

HONOR LECTURES

GLOBAL PERSPECTIVES ON SICKLE CELL DISEASE

New Genotypes in the Middle East Keynote speaker: Professor Salam Al Kindi, MD Moderator: Lewis Hsu, MD Friday, Oct. 17 | 1:15 p.m.

Avedon CD Salam Al Kindi, BA, MB, BCh, BAO, DME, MSc, FRCP, is a professor and senior consultant for the department of hematology at Sultan Qaboos University Muscut Oman.

Dr. Al Kindi is a trained physician in hematology/oncology in Dublin, Ireland. He is a graduate in bone marrow transplant at Fred Hutch Cancer Center in Seattle, Washington.

He was head of the department of hematology, where he served for 10 years. He also served as the deputy clinical director of Sultan Qaboos University Hospital for clinical affairs.

His research interests include sickle cell disease, chronic leukemia and autoimmune disorders – with over 100 articles published in international peer-reviewed journals including the New England Journal of Medicine, Hematology and American Society of Hematology’s blood. Dr. Al Kindi is also the founder of Oman Hereditary Blood Disorders Association and currently serves as deputy chairman. He is a Global Alliance of Sickle Cell Disease Organizations (GASCDO) board member and chair of the scientific committee.

29

HONOR LECTURES 2025 CLARICE D. REID, MD, LECTURE

The Pivotal Impact of Newborn Screening on Sickle Cell Disease Keynote speaker: Wanda Whitten-Shurney, MD Moderator: Lewis Hsu, MD Friday, Oct. 17 | 2:05 p.m.

Avedon CD

Wanda Whitten-Shurney, MD, was exposed to the sickle cell movement at an early age. Her visionary father, Dr. Charles Whitten, recognized the need for national awareness and support when he co-founded the National Association for Sickle Cell Disease, now known as the Sickle Cell Disease Association of America, Inc. Dr. Whitten-Shurney has over 30 years of experience providing high-quality and compassionate care for children with sickle cell disease at the Comprehensive Sickle Cell Clinic at Children’s Hospital of Michigan. She currently serves as the CEO and medical director of the Sickle Cell Disease Association of America Michigan Chapter and as the medical advisor for the Sickle Cell Reproductive Health Education Directive (SC RED).

She had the honor of serving on the NHLBI SCD Research Advisory Committee from 2016 to 2020.

Dr. Shurney completed her undergraduate work at the University of Michigan and attended medical school at Howard University. She received her pediatric residency training at Children’s Hospital of Michigan and spent a year in their Hematology Oncology Fellowship.

She is currently focused on the development of the Charles F. Whitten Center of Excellence in the Henry Ford Health System to provide wrap-around services for adults living with sickle cell disease in Michigan.

30

A D VO CAC Y U P DAT E NATIONAL SICKLE CELL DISEASE ADVOCACY UPDATE

Navigating Health Care Coverage in 2025 Thursday, Oct. 16 | 1 p.m.

Avedon CD Moderator: Thomas Johnson is the executive director of ASAP 340B and chair of the Sickle Cell Disease Association of America, Inc. He has 30 years of professional experience in health care, nonprofit and association management. Thomas served for nine years as president and CEO of Medicaid Health Plans of America and was president and CEO of the DC Hospital Association. He also served as the vice president of compliance and external affairs with DC Chartered Health Plan, and as senior advisor to the Gorman Health Group.

Panelists: Leslie Brady is a senior policy advisor with the Artemis Policy Group and serves as a federal policy advisor to the Sickle Cell Disease Association of America, Inc. Prior to joining Artemis, Leslie spent more than five years at the American Society of Hematology where she focused on issues relating to Medicare coverage and reimbursement and access to care. Leslie is familiar with the operations of medical professional societies and the importance of engaging in advocacy with both Congress and federal agencies. Previously, Leslie worked for over two years in the Office of Congressman Higgins (D-NY- 26), as a health policy advisor.

TaLana Hughes, MPH, is the executive director of the Sickle Cell Disease Association of Illinois (SCDAI) serving as a voice for families, a fighter for equity and a force for change.

What started as an internship at SCDAI grew into a lifelong mission — one that has changed lives across Illinois and beyond. With over 20 years of advocacy, education and leadership, TaLana has expanded programs, secured critical funding and pushed for policy changes to ensure that individuals with sickle cell disease receive the comprehensive care and support they deserve. TaLana was recently honored as the 2025 Chicago Defender Women of Excellence Honoree. She is a board member of SCDAA and president of the Executive Director Leadership Council.

31

L E N N E T T E B E N JA M I N , M D , M E M O R I A L PA N E L

Health Care Systems and The Economics of Sickle Cell Disease Thursday, Oct. 16 | 3 p.m. | Avedon CD Moderator: Wanda Whitten-Shurney, MD Panelists: Sophie Lanzkron, MD, is a professor of medicine and division director of hematology at Thomas Jefferson University. She is internationally recognized for her pioneering research on the optimal care and management of patients with sickle cell disease.

She served on the NIH Expert Panel in the Management of Sickle Cell Disease and on the American Society of Hematology’s Sickle Cell Guideline Panel. She is one of the founders of the National Alliance of Sickle Cell Centers and currently serves as the vice president. Her research focus is on improving the quality of care provided to SCD population.

Paula Tanabe, PhD, RN, is the Laurel B. Chadwick Distinguished Professor in the School of Nursing and professor in the School of Medicine at Duke University. She practiced as an emergency department (ED) nurse and ED clinical nurse specialist for 25 years. She is a nationally recognized expert on improving the treatment of individuals with SCD in the ED and has conducted multiple trials with a strong focus on implementation of individualized vs. weight-based opioid protocols. She is a member of the Medical Research Committee tasked by the NC Governor’s Council on SCD to improve the SCD care in North Carolina EDs. Professor James Taylor, MD, has served as director of Howard University’s Center for Sickle Cell Disease since 2017. Prior to joining Howard University, he was a clinical investigator in the NHLBI intramural program at NIH and held a clinical appointment in pediatric hematology at The Johns Hopkins Hospital. His clinical focus has been adult non-malignant hematology. His research interests include the genomics of transfusion related complications in sickle cell disease, the history of sickle cell disease and international collaborations in Congo Brazzaville and Sierra Leone. He has authored more than 80 research publications.

32

C L I N I C A L T R I A L S U M M I T 2025

Clinical Trial Summit 2025 Sponsored by

Friday, Oct. 17 | 9 a.m. | Avedon CD Moderator: Kim Smith-Whitley, MD Topics and Presenters: Determining the Right Patient for the Right Therapy Dr. Crawford Strunk is a pediatric hematologist. After earning his medical doctorate at the State University of New York Upstate Medical University, he completed his pediatric residency at Geisinger Medical and his fellowship in pediatric hematology/oncology at Rainbow Babies and Children’s Hospital. At Toledo Children’s Hospital, he served as the director of the Pediatric Sickle Cell Center since 2006 and the co-director of the adult sickle cell center from 2018 until 2023. He has served as the co-director of the Lifespan Sickle Cell Program at the Cleveland Clinic since 2023. Dr. Strunk is currently the SCDAA vice chief medical officer.

Clinical Trials 101: What You Need to Know Before Participating Titilope Fasipe, MD, PhD, is the co-director of the Texas Children’s Sickle Cell Program.

She is intrigued by the clinical challenges of non-malignant hematologic diseases, where in particular, patients with sickle cell disease continue to have significant co-morbid complications and decreased lifespan. She has long been passionate about the psychosocial barriers to care experienced by children with sickle cell, especially during the transitional years. She was appointed to the first Texas Sickle Cell Advisory Committee and is the current chair of the Houston Sickle Cell Collaborative.

Redefining Clinical Trials: Designing Research FOR Sickle Cell Disease WITH People Living with Sickle Cell Disease Ify Osunkwo, MD, MPH, is a lifespan hematologist and chief patient officer and vice president at Novo Nordisk. She has a passion for health equity and aims in her research to identify the comparative effectiveness of multimodal interventions that are effective in eliminating health disparities in black and brown populations. She has over 25 years of experience in clinical management, population health — using the chronic disease management model, quality improvement and program development. She is the founder and director of the Sickle Cell Disease Enterprise at Atrium Health — serving 1,400 adults and 400 children with sickle cell disease.

33

LO N Z I E L E E J O N E S SYM P O S I U M

SMART GOALS for Wellness Friday, Oct. 17 |11 a.m. | Avedon CD

Facilitators: Genice T. Nelson, DNP, APRN, ANP-BC, is a nurse practitioner specialist with UConn Health. She graduated with honors in 2003 and has more than 19 years of diverse experience, especially in nursing. Genice is committed to making a difference in the sickle cell patient community.

TaLana Hughes, MPH, is the executive director of the Sickle Cell Disease Association of Illinois (SCDAI) serving as a voice for families, a fighter for equity and a force for change. What started as an internship at SCDAI grew into a lifelong mission — one that has changed lives across Illinois and beyond. With over 20 years of advocacy, education and leadership, TaLana has expanded programs, secured critical funding and pushed for policy changes to ensure that individuals with sickle cell disease receive the comprehensive care and support they deserve. TaLana was recently honored as the 2025 Chicago Defender Women of Excellence Honoree. She is a board member of SCDAA and president of the Executive Director Leadership Council.

Andrea Matthews is the executive director of The Brashear Association, Inc., and the founder of the Children’s Sickle Cell Foundation, Inc., where she served as executive director for 13 years. With more than 20 years of experience in the nonprofit sector, Andrea believes in the power of innovation, advocacy and change. “Your voice can change the world,” is a message that she shares with emerging leaders. She has taken her message around the world, speaking in Ghana, Brazil and Canada. She is an author and transformative leader, wife and mother of a young adult living with SCD.

34

®

Sickle Cell Disease Association of America, Inc. presents an

SCD MASTERCLASS

Sickle Cell in the Media: Scene and Heard Hosted by

Cheat Codes

SATURDAY, OCTOBER 18 | 10:15 A.M. CT at the SCDAA 53rd Annual National Convention Loews Chicago-Ohare Hotel | Avedon CD Room Join us for this panel discussion where we will explore the portrayal of sickle cell warriors in film and television, and its impact on the public's perception of sickle cell disease.

Moderated by: Ahmar Zaidi, M.D., and Mike Callaghan, M.D. Panelists: Gabriel Badejo, Director/Producer/Warrior Nick Hudson, Social Impact Film Producer/Sickle Cell Advocate Natasha Thomas, Warrior

Legacy Sponsor

!

LIGHTS A! CAMER !

AC T I O N 35

EMPOWERMENT:

F O R G I N G A H E A D W I T H S T R E N G T H A N D C O U R AG E

2025 Chairman Award Honors a current or former SCDAA Board Member or a dedicated leader in the sickle cell community whose exceptional service has uplifted sickle cell warriors and caregivers.

This recognition highlights individuals whose tireless service and commitment have strengthened SCDAA’s mission and created a lasting impact on the sickle cell community.

Wayne A. I. Frederick, MD, MBA Wayne A. I. Frederick, MD, MBA, was appointed interim president of Howard University in September 2025. Previously, Dr. Frederick served as the interim CEO of the American Cancer Society and the American Cancer Society Cancer Action Network, guiding both organizations and their more than 3,000 team members and 1.3 million volunteers. Today, he continues to operate and lecture second and third-year medical students and surgical residents of the Howard University School of Medicine. An internationally recognized expert on disparities in health care and medical education, Dr. Frederick is the author of numerous peer-reviewed articles, book chapters, abstracts and editorials.

His research addresses narrowing racial, ethnic and gender disparities in cancer care outcomes.

2025 Community Health Worker P.O.W.E.R. Award Celebrates an exceptional CHW who embodies professionalism, integrity and dedication in serving the sickle cell disease community. This honor recognizes a CHW who consistently goes above and beyond to provide support, advocacy and empowerment, making a meaningful difference in the lives they touch. Their work reflects the highest values of the profession and a deep commitment to improving health outcomes.

Chondra Stone Chondra Stone is a certified community health worker, educator and counselor at the Sickle Cell Disease Association of America – Mobile Chapter. Chondra provides culturally responsive education on sickle cell disease and trait awareness, supports screenings and outreach events, and serves as a vital liaison between patients, families and health care providers. Her accomplishments include spearheading partnerships with local clinics, strengthening referral pathways for patients and helping to launch the Community Health Worker Internship Program.

She is widely recognized for her ability to connect with sickle cell warriors and their families, fostering trust while breaking down complex medical information into clear, practical steps that support healthier lives.

36

2 0 2 5 A WA R D W I N N E R S

2025 Champion Awards Honors an individual who has demonstrated exceptional dedication to advancing the cause of sickle cell disease through leadership, advocacy and/or action. This award recognizes a staunch supporter, often a legislator or influential leader — who has championed legislation, policy or funding to improve the lives of those affected. Their tireless efforts and unwavering commitment have made a lasting impact on the sickle cell community.

U. S. Sen. Cory Booker Sen. Cory Booker (D-NJ) has emerged as a national leader in the effort to fix the criminal justice system and end mass incarceration, helping craft the most sweeping set of criminal justice reforms in a generation, the First Step Act, which became law in December 2018. He has also worked to reform America’s broken food system, address our nation’s nutrition crisis and end food insecurity.

He sits on the Judiciary Committee, the Foreign Relations Committee, the Committee on Agriculture, Nutrition, and Forestry, and the Committee on Small Business and Entrepreneurship.

U.S. Sen. Tim Scott Sen. Tim Scott (R-SC) has served in the U.S. Senate since 2013. During his time in office, he has been a tireless advocate for creating more opportunities for families living paycheck-to-paycheck and helping children in poverty have access to quality education. He launched his Opportunity Agenda, a legislative package aimed at achieving these goals, as well as the Senate Opportunity Coalition, a group of Senators committed to helping those in need. He has sponsored balanced budget amendments throughout his time in Congress. He serves on the Finance Committee, Committee on Health, Education, Labor and Pensions, Committee on Banking, Housing & Urban Affairs, Committee on Small Business and Entrepreneurship and Special Committee on Aging.

In February 2025, long-time SCD champions Senators Cory Booker (D-NJ) and Tim Scott (R-SC) reintroduced the Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act (S. 735/H.R. 1796), which would reauthorize the Health Resources and Services Administration’s (HRSA) Sickle Cell Disease Treatment Demonstration Program for another five years. In addition, they also reintroduced the Sickle Cell Disease Comprehensive Care Act (S. 721), which would allow state Medicaid programs to provide comprehensive and coordinated care to sickle cell warriors through a health home model.

37

2025 Advocacy Award Recognizes an individual who has gone above and beyond in championing the needs of the sickle cell community and amplifying their voice through passionate and persistent action. This individual has made it their mission to raise awareness, influence meaningful change and create a lasting positive impact on those living with sickle cell disease, their caregivers and the entire sickle cell community. Their tireless dedication and unwavering commitment embody the true spirit of advocacy.

Mary Murph Mary Murph faced a profound challenge when her daughters were diagnosed with sickle cell disease. Frustrated but undeterred, she reached out to doctors, legislators and researchers nationwide, building her own understanding of the disease and ultimately becoming a self-taught advocate. In 1972, she founded the St. Petersburg Chapter of the Sickle Cell Disease Association of America (SCDAA). What began as a grassroots effort operated from her home quickly became a vital resource for the local community. Today, under Mary’s leadership as president and CEO — a volunteer role she continues to fulfill — the chapter has grown to provide a wide array of services offering much-needed support and resources.

2025 President’s Award Honors an SCD leader whose vision, dedication and leadership have driven significant progress for the sickle cell community. The award recognizes an individual who has led their organization to launch innovative initiatives or remarkable accomplishments that have created meaningful and lasting impact on warriors and caregivers. Their passion and commitment have set a standard of excellence for advancing sickle cell advocacy, support and awareness.

TaLana Hughes, MPH TaLana Hughes, MPH, is the executive director of the Sickle Cell Disease Association of Illinois (SCDAI) serving as a voice for families, a fighter for equity and a force for change. What started as an internship at SCDAI grew into a lifelong mission — one that has changed lives across Illinois and beyond. With over 20 years of advocacy, education and leadership, TaLana has expanded programs, secured critical funding and pushed for policy changes to ensure that individuals with sickle cell disease receive the comprehensive care and support they deserve. TaLana was recently honored as the 2025 Chicago Defender Women of Excellence Honoree. She is a board member of SCDAA and president of the Executive Director Leadership Council.

38

2025 Lifetime Achievement Award Honors an individual whose lifelong dedication, passion and body of work has significantly advanced the sickle cell community. Through both their professional and personal efforts, they have championed positive change, increased awareness and improved the lives of those living with sickle cell disease and their caregivers. Through their life’s work, they have made a profound impact on the community, creating a lasting legacy of dedication, progress and hope for future generations.

Representative Danny K. Davis Danny K. Davis (D-IL-07) serves on the Ways and Means Health Subcommittee and is the Subcommittee Ranking Member of the Worker and Family Support Subcommittee. He is a member of the Congressional Black Caucus, Progressive Caucus, Congressional Equity Caucus, Urban Caucus, Community Health Center’s Caucus, Congressional Sugar Caucus, Congressional Caucus on Black Men and Boys and co-chair of the Congressional Caucus on Re-entry. He has received hundreds of awards and citations for outstanding work in the areas of health, education, human relations, politics and advocacy, including six honorary doctorate degrees from colleges and universities.

Representative Davis has championed numerous pieces of sickle cell disease specific legislation, including serving as the Democratic lead on H.R. 1796, the Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act, and H.R. 5178, the Sickle Cell Disease Comprehensive Care Act. He leads Congressional resolutions recognizing June 19 as World Sickle Cell Awareness Day and September as National Sickle Cell Disease Awareness Month.

Rep. Davis has also led letters requesting funding for the federal sickle cell disease programs and has fought to reform the Social Security disability criteria for sickle cell disease warriors.

39

bluebird bio is now GENETIX BIOTHERAPEUTICS Our name has changed, but our mission remains the same–transforming lives through curative therapies for people with sickle cell disease, β-thalassemia, and cerebral adrenoleukodystrophy.

Visit our booth to learn about what’s next for Genetix.

Scan to visit our website

©2025 Genetix Biotherapeutics Inc. All rights reserved. Corp-US-00242 09/25

There are many barriers to e�ective care for those living with SCD Scan to share your experience caring for those living with Sickle Cell Disease.

40

Fulcrum Therapeutics is pleased to support the 53rd Annual SCDAA National Conference Fulcrum Therapeutics® launched with a bold vision to deliver disease-modifying therapies that improve the lives of people with rare genetic diseases like sickle cell disease.

We take great pride in being purposeful patient partners who do this work, not just for patients, but with patients.

Scan to Learn More about Fulcrum’s Phase 1b Trial in SCD

fulcrumtx.com Fulcrum Therapeutics, Inc. 26 Landsdowne Street Cambridge, MA 02139

Quannecia Living with Sickle Cell Disease

WHEN A DISEASE IS RARE, LISTENING SHOULDN’T BE.

Breaking new ground to advance science and potentially change lives with investigational precision genetic medicines.

Beam Therapeutics is proud to support the SCDAA National Convention.

beamtx.com

Listening to, collaborating with, and working for people with rare diseases drives everything we do as a company.

Your struggles and successes fuel our passion, help us grow, and inspire us to do more.

That’s why we are committed to letting your voice shape how we develop resources and programs needed to face the challenges of living with a rare disease.

As part of these continued efforts, Chiesi Global Rare Diseases is proud to support the Sickle Cell Disease Association of America's 53rd Annual National Convention. . ©CHIESI FARMACEUTICI S.p.A., 2025 All rights reserved.

PP-RA-01199 V1.0

41 9996-Patient_Advocacy_Ad-Resizes-M.indd 4

3/19/21 12:14 PM

LO CA L C H A P T E R S ALABAMA • North Alabama Sickle Cell Foundation – Huntsville • SCDAA – West Alabama Chapter – Northport • SCDAA – Central Alabama – Birmingham • SCDAA – Mobile Chapter Inc. – Mobile • Sickle Cell Foundation of the River Region – Montgomery • Southeast Alabama Sickle Cell Association Inc. – Tuskegee CALIFORNIA • Cayenne Wellness – Glendale COLORADO • Colorado Sickle Cell Association Inc. – Denver CONNECTICUT • Michelle’s House/SCDAA Connecticut – Bridgeport/New Haven DELAWARE • Tova Community Health – Wilmington FLORIDA • Levi Long Sickle Cell Association Inc.– Daytona Beach • SCDAA – Dade County Chapter Inc. – Miami • SCDAA – Escambia and Santa Rosa Counties – Pensacola • SCDAA – St. Petersburg Chapter – St. Petersburg • Sickle Cell Association of Hillsborough County – Tampa • Sickle Cell Disease Association of Broward County • Sickle Cell Disease Association of Florida – Tampa • Sickle Cell Foundation Inc. – Tallahassee • Sickle Cell Foundation of Palm Beach County & Treasure Coast – West Palm Beach • Sickle Cell Medical Advocacy Inc. – Orlando • Tri-County Sickle Cell Disease Association of Orange, Osceola and Seminole Counties – Orlando GEORGIA • Sickle Cell Foundation of Georgia Inc. – Atlanta ILLINOIS • Sickle Cell Disease Association of Illinois – Chicago • Sick Cells – Lisle 42

LO C A L C H A P T E R S INDIANA • Martin Center Inc. – Indianapolis KANSAS • Uriel E. Owens Sickle Cell Disease Association of the Midwest – Kansas City LOUISIANA • Etta Pete Sickle Cell Anemia Foundation – Lake Charles • Northeast Louisiana Sickle Cell Anemia Foundation Inc. – Monroe • Sickle Cell Anemia Resource Foundation – Alexandria • Sickle Cell Association of South Louisiana – Baton Rogue • Sickle Cell Disease Northwest Louisiana – Shreveport MARYLAND • Association or the Prevention of Sickle Cell Anemia Inc. — Harford/Cecil Counties and Eastern Shore – Aberdeen • Maryland Sickle Cell Disease Association – Columbia MASSACHUSETTS • Massachusetts Sickle Cell Association – Boston MICHIGAN • SCDAA – Michigan Chapter Inc. – Detroit MINNESOTA • Sickle Cell Foundation of Minnesota – Minneapolis MISSOURI • Sickle Cell Association – St. Louis NEVADA • Bridging the Gap – Adult Sickle Cell Foundation of Nevada – Las Vegas NEW JERSEY • The Sickle Cell Association of New Jersey Inc. – Newark NEW MEXICO • The Sickle Cell Council of New Mexico Inc. – Albuquerque

43

LO CA L C H A P T E R S NEW YORK • Falling Angels Sickle Cell Foundation – Garnerville • New York State Sickle Cell Advocacy Network Inc. – Queens • Sickle Cell/Thalassemia Patients Network (SCTPN) – Brooklyn NORTH CAROLINA • Bridges Pointe Sickle Cell Foundation – Durham • Piedmont Health Services and Sickle Cell Agency – Greensboro OHIO • SCDAA – Ohio Sickle Cell and Health Association – Columbus OKLAHOMA • Supporters of Families with Sickle Cell Disease Inc. – Tulsa OREGON • Sickle Cell Anemia Foundation of Oregon – Portland PENNSYLVANIA • Childrens Sickle Cell Foundation Inc. – Pittsburgh • SCDAA – Philadelphia/Delaware Valley Chapter • The South Central PA Sickle Cell Foundation – Harrisburg SOUTH CAROLINA • James R. Clark Memorial Sickle Cell Foundation – Columbia TENNESSEE • Sickle Cell Foundation of Tennessee – Memphis TEXAS • Sickle Cell Association of Houston – Houston • Sickle Cell Association of Texas Marc Thomas Foundation – Austin VIRGINIA • Sickle Cell Association Inc. – Norfolk WISCONSIN • Sickle Cell Warriors of Wisconsin – Milwaukee 44

SCDAA’s CLINICAL TRIAL FINDER SEARCH WEBSITE + CONNECT TO CLINICAL TRIALS The Sickle Cell Disease Association of America,

Search for trials by keyword, location, study type

Inc., Clinical Trial Finder is a centralized, simple-

and phase — all in one place.

to-navigate resource that helps people with sickle cell disease, their families and caregivers find

Download from the Apple or Android app

clinical trials.

store today!

Your participation helps guide breakthroughs and

sicklecelldisease.org/clinical-trial-finder

also gives you access to these new treatments before they are available to the public. You are our heroes!

® 45

EMPOWERMENT:

F O R G I N G A H E A D W I T H S T R E N G T H A N D C O U R AG E

T H A N K YO U S C D C . A . R . E . S .

CO N S O R T I U M M E M B E R S The SCD C.A.R.E.S. (Collaboration of Advocates for Research, Education and Science) Consortium raises awareness about the importance of clinical trials and why it’s beneficial for sickle cell warriors to participate in them. Sickle Cell Disease Association of America, Inc., along with our strategic partners, joined together to educate and encourage more trial participation while providing opportunities and better options for the treatment of sickle cell disease. Learn more at sicklecelldisease.org/SCDCARES.

46

WAYS T O G I V E SUPP ORT OU R COM M U N I T Y Together, we can make a difference in the lives of those who are affected by sickle cell disease! Your taxdeductible donation to SCDAA will assist us in providing critical support to our chapters and affiliates throughout the country. Please consider a gift today.

WORKPLACE GIVING C A M PA I G NS

Support SCDAA through your company’s annual corporate giving campaign. It is a convenient way to give through regular payroll deductions. SCDAA participates in the Community Health Charities Federation, the largest workplace giving campaign devoted to health. If your employer participates in Community Health Charities campaigns, designate your contribution to Sickle Cell Disease Association of America, Inc. SCDAA also accepts matching gifts.

For more information, contact Erika Cartledge at ecartledge@sicklecelldisease.org or call

N O N - C ASH G IFTS

SCDAA accepts the gift of non-cash assets like stock, charitable IRA distribution or cryptocurrency.

To make a stock gift, contact Reginald Hart, Jr., at rphartjr@sicklecelldisease.org or call 410-528-1555.

Gifts from donor-advised funds or individual retirement accounts and/or cryptocurrency donations can be made by visiting bit.ly/SCDAA_DAF.

LE GACY

D ON AT ION

A planned gift is a contribution that requires planning and offers opportunities for you to support SCDAA now and in the future. Remembering SCDAA gives you the opportunity to leave a legacy in support of our mission.

Consider a bequest, charitable annuity or other option.

For more information on how to leave a legacy donation, please contact Reginald Hart, Jr., at rphartjr@sicklecelldisease.org or call 410-528-1555.

410-528-1555.

TRI BUT E

DO N ATE TO DAY

ME M OR I A L

Make a donation in honor of a loved one. Create a personal page with a picture of your loved one and invite friends and family to donate in memory or in honor of the person.

SCDAA | 7240 PARKWAY DRIVE, SUITE 180 | HANOVER, MD 21076 | SICKLECELLDISEASE.ORG 47

T H A N K YO U T O O U R S P O N S O R S

LEGACY

DIAMOND

PLATINUM

48

GOLD

SILVER

BRONZE

SUPPORTER

49

PROUD SILVER SPONSOR

S I C K L E

C E L L

D I S E A S E

A S S O C I AT I O N

O F

A M E R I C A ,

®

Thanks to all of the convention speakers and attendees for your support of our 53RD ANNUAL NATIONAL CONVENTION! We hope to see you again next year!

50

I N C .

MEET THE VERTEX PATIENT EDUCATORS OUR COMMITMENT Vertex Patient Educators are committed to providing education about sickle cell disease (SCD) to help empower people living with this condition to have meaningful conversations with their healthcare providers.

Visit our booth to: Connect with the Patient Educators and other members of your community Learn more about sickle cell disease and gene therapy Get helpful tips for talking to your healthcare provider Vertex Patient Educators are not able to provide medical advice. A patient’s healthcare team is always the primary source for information related to their health and treatment.

FIND US AT SCDAA Annual National Convention Rosemont, Illinois

Visit our booth and learn more about what we do at VertexEducators.com.

October 15-18, 2025

Vertex and the Vertex triangle logo are registered trademarks of Vertex Pharmaceuticals Incorporated.

Vertex Patient Educators is a trademark of Vertex Pharmaceuticals Incorporated. © 2025 Vertex Pharmaceuticals Incorporated l VXR-US-02-2500578 (v1.0) l 09/2025

Follow us: @vertexeducators 51

“It’s like living outside the box while everyone else lives inside.

My body isn’t normal, my schedule isn’t normal, I can feel more sluggish.”

—Kenneth 27, Living with sickle cell (with his partner)

Please scan the QR code to visit our Instagram page @liveunlimitedSCD and stop by our Novo Nordisk® booth!

No data will be collected by scanning.

Novo Nordisk Inc. 800 Scudders Mill Road Plainsboro, New Jersey 08536, U.S.A. Novo Nordisk is a registered trademark of Novo Nordisk A/S. © 2025 Novo Nordisk Printed in the U.S.A. US25SCD00051 September 2025

US25SCD00051_905346_v6.indd 1

9/22/25 5:41 PM