SCDAA 51st Annual National Convention Program Book by BHComms

SICKLE CELL DISEASE ASSOCIATION OF AMERICA 51ST ANNUAL NATIONAL CONVENTION

COMMU N I T Y TO G E T H E R O N T H E PAT H TO P RO G R E S S . OCTOBER 11-14, 2023

Legacy Sponsor

U N I T Y

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To learn more, visit SickleCellSpeaks.com PP-LTV-USA-2692

U N I T Y TABLE OF C O N T E N T S

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

Lonzie Lee Jones Symposium......................................23

President’s Greeting....................................................... 5

Honor Lectures.............................................................24

Chief Medical Officer’s Greeting................................. 6

Advocacy Update.......................................................27

Convention and Gala Committees............................... 8

SCDAA Masterclass....................................................30

SCDAA Board of Directors........................................... 9

Awards.......................................................................... 31

Advisory Board............................................................10

SCDAA Members........................................................34

MARAC Members........................................................11

SCDAA’s Clinical Trial Finder.....................................37

Who We Are................................................................ 14

SCD C.A.R.E.S. Consortium Members.......................38

Abstract Reviewers....................................................... 15

The Nod To “Naz” Art Exhibit....................................39

Teen Ambassador........................................................ 17

Sponsors.......................................................................40

National Highlights...................................................... 18

Ways to Give...............................................................42

COVID-19 The Sickle Cell Disease Association of America takes the continuing risk of COVID-19 seriously. We encourage convention participants to respect others who may have more severe health concerns and need to wear masks. The convention schedule includes wellness breaks for participants to rest. If you have concerns or need support, please find a Sickle Cell Disease Association of America staff member. 3

N AT I O N A L S T A F F

U N I T Y Regina Hartfield President/Chief Executive Officer

Reginald Hart, Jr. Chief Financial Officer

Kevin Amado, MPA Community Impact & Education Manager

Kristen Cox Member Engagement Coordinator Additional support provided by Bonnie Heneson Communications, Melvina Jones and Amy Thomas PUBLISHER:

OUR MISSION To advocate for people affected by sickle cell conditions and empower community-based organizations to maximize

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

quality of life and raise

Bonnie Heneson Communications, Inc.

public consciousness while

7240 Parkway Drive, Suite 180

advancing the search for a

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

universal cure.

PRESIDENT’S G R E E T I N G

WELCOME TO SCDAA’S 51ST ANNUAL CONVENTION! Thank you for joining us for this year’s event with our Board of Directors, community-based member organizations, warriors, global partners, staff and supporters.

This year’s theme is CommUNITY: Together on the Path to Progress. The concept of “community” and the emphasis on “UNITY” is so on-point and important in this space and time in the history of sickle cell disease in this country. This year’s 51st Annual National Convention brings us together in person for the first time since 2019 and culminates our year-long celebration of 50 years of serving as the national voice for sickle cell disease in the areas of advocacy, research, public and professional health education, patient services, community services and more. Convention topics are reflective of the totality and complexity of the SCD landscape and underscore the concept of unity in all its definitions. Find out what it truly means to Leave No One Behind from keynote speaker Vence Bonham. Be inspired by keynote speaker Dr. Oladipo Cole’s lived experience during From Sickness to Insight. Learn more about the facts and myths of exercise during the Impact of Physical Activity and Sickle Cell from Dr. Joy Ogunsile. Our iconic sessions, like Sickle Cell 101 with Dr. Wanda Whitten-Shurney and the Lonzie Lee Jones Patient Advocacy Symposium, are back. It is an honor to share the work of the late warrior and artist Hertz Nazaire with you. Take time to visit the Nod to “Naz” Exhibit: A Tribute to Hertz Nazaire and view key pieces from his vast collection. Be sure to attend the live SCDAA SCD Masterclass – The Perfect Red Blood Cell: An SC Dream Redefined. Community-based organizations play a critical role in the SCD community – historically and in current practice. Learn more about their impact during the 50th Anniversary Roundtable discussion. Also, share an “each one, teach

one” moment with your colleagues. Explore how to develop successful collaborations and effective ways to build organizational capacity. Get up-to-speed on the latest innovative research covered by abstracts in the areas of clinical, psychosocial, community and public health policy and clinical research. We are also collaborating with the Emergency Department Sickle Cell Care Coalition (EDSC3) to initiate a national dialogue on how those living with SCD are perceived and treated in the emergency department. Together, we will present the Frameworks to Improve the Emergency Department Experience for Sickle Cell Disease summit on this important subject. Dr. Aisha Taylor, president-elect of the American College of Emergency Physicians (ACEP), will be our keynote speaker. Get ready to root for your favorite team and join us for Family Feud: East Coast vs. West Coast! Don’t forget to visit the vendors in the Exhibition Hall and learn the latest from industry leaders. And, last, but absolutely not least, join us for an evening of elegance and comradery at the SCDAA Gala. You’ll want to Show Up and Show Out! On behalf of the SCDAA board of directors, national office staff and our member organizations, thank you for all your support, partnership and CommUNITY throughout 2023. I hope you enjoy the convention! Regina Hartfield President & CEO Sickle Cell Disease Association of America, Inc. 5

CHIEF MEDICAL OFFICER’S G R E E T I N G

Thank you for joining us on the “Path to Progress” at the 51st Annual National Convention. 2023 has been a landmark year. Public awareness and understanding of sickle cell disease has grown in many areas. Research into new treatments is rapidly expanding, leaving us with high hopes - and many questions. These scientific and cultural shifts are like wind in our sails as we continue to pursue our mission. SCDAA has been at the forefront of discussions about gene therapy. This exciting category of research has many unknowns. We have been working hard to help sickle cell warriors and community-based organizations grasp what gene therapy options mean and understand their significance. Our very first Masterclass series helped tackle some of these questions. We hope you will join us for our final, live session on Thursday. We continue to bridge the gap between researchers, elected officials and our warrior community as research progresses. Our medical leadership team has held meetings with key stakeholders to share our perspectives and recommendations for the best way forward. Access to research opportunities is better than ever. Our Clinical Trial Finder makes it easy for families to identify nearby studies. We have worked with our partners to build a rich archive of information on the SCDAA website and OneSCDVoice, which can serve as lifeline for warriors and caregivers during the decisionmaking process.

SCDAA’s MARAC continues to monitor issues of importance to our community. Encouraging participation in clinical research was a priority this year. The committee also addressed influenza, penicillin shortages, crizanlizumab, COVID updates and more. MARAC also works for two-way communication with SCDAA’s Executive Leadership Council and community health workers. We are so excited to see you in person for the first time since 2019! The worldwide COVID-19 pandemic seems to have settled down; however, please be mindful of your health and the health of others attending the convention. We are seeing a wave of COVID-19 infections in the United States, and we are entering cold and flu season. We encourage you to take precautions. SCDAA staff members and volunteers are available if you have concerns or need assistance. We hope that you enjoy the Annual National Convention. Take the next few days to deepen your knowledge and explore new research. Connect with old friends and make new ones. Experience the joy that comes from connecting with those who understand. With unity, we will move forward. Lewis Hsu, MD, PhD Chief Medical Officer Sickle Cell Disease Association of America Inc.

®®

Join us as we culminate 50 years at our

Anniversary Gala Friday, October 13 • 7 p.m. Crystal Gateway Marriott Arlington, VA

Live Entertainment Dinner and Dancing Silent Auction Legacy Sponsor:

THANK YOU TO OUR C O M M I T T E E S SCDAA thanks the members of the Convention Planning and Gala Committees for the many hours they spent and the commitment they made to bring this wonderful event to fruition.

CONVENTION PLANNING COMMITTEE:

Miguel Abboud, MD, PhD Mary LaMar Bentley Raffaella Colombatti, MD, PhD Kristen Cox Melissa Creary, PhD, MH Reginald Hart

CONVENTION PLANNING COMMITTEE CHAIRS Biree Andemariam, MD Lewis Hsu, MD, PhD

Regina Hartfield TaLana Hughes, MPH Baba Inusa, MD Donnell Ivy, MD, MPH Bernie Lawrence-Watkins, JD Genice Nelson, DNP, APRN, ANP-BC Prof. Kim Smith-Whitley, MD Bobby Staten III Natasha Thomas

GAL A COMMITTEE CHAIR Bernie Lawrence-Watkins, JD

GALA COMMITTEE:

Kristen Cox Andrea Hart Melody Johnson Morales, PhD Susan Sullivan Tamnika Taylor Natasha Thomas Susan Torrence

MEET OUR B O A R D O F D I R E C T O R S

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

Crystal A. Riley, PharmD. MHA, MBA Vice Chair Deputy Director Government Policy & Reimbursement Baxter International, Inc. Washington, DC

JaKela Walker Board Treasurer Finance Director and Global Financial Controller DSM BioMedical, Inc. Exton, PA

Bobby Staten III Board Secretary Principal Solutions Architect Appleseed Consulting Atlanta, GA

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

Edward Donnell Ivy, MD, MPH Vice Chief Medical Officer Health Education Coordinator Association of Black Cardiologists, Inc. Washington, DC

Biree Andemariam, MD Director, New England Sickle Cell Institute Associate Professor of Medicine Division of Hematology/Oncology University of Connecticut Health Center Farmington, CT

David N. Braxton, PhD Senior Vice President Global Third Party Bank of America Program Executive Atlanta, GA

Melissa Creary, PhD, MPH Assistant Professor, Health Management and Policy School of Public Health University of Michigan Ann Arbor, MI Continued on next page. 9

BOARD OF DIRECTORS

Continued from Page 9.

Ed Flowers Managing Partner and Executive Committee Member DHR International Executive Search Atlanta, GA

TaLana 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

Bernie Lawrence-Watkins, Esq Principal Attorney B. Lawrence Watkins & Associates Atlanta, GA

Monica B. Mitchell, Ed.D. Founder/President and CEO MERAssociates, LLC (MERA) Vienna, VA

Kim Smith-Whitley, MD Site Head, Advisor of Scientific and Clinical Affairs Pfizer San Francisco, CA

ADVISORY BOARD Kimberly Clare Manager, Accounting Controls and Compliance American-Speech-LanguageHearing Association (ASHA) Lennette Benjamin, MD Honorary, SCDAA Board of Directors

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

Gwendolyn Poles, DO Retired Physician Honorary Medical Staff Member Faculty/Medical Director Internal Medical Residency Program UPMC Pinnacle Health Chris Ruffin, Jr. Senior News Producer ABC24 TV Memphis Memphis, TN

U N I T Y MEDICAL AND RESEARCH

Miguel R. Abboud, MD, PhD Professor of Pediatrics and Pediatric Hematology- Oncology Chairman Department of Pediatrics and Adolescent Medicine American University of Beirut, Lebanon Biree Andemariam, MD Vice Chair, Sickle Cell Disease Association of America Director, New England Sickle Cell Institute Professor of Medicine University of Connecticut Health Farmington, Connecticut Shawn Bediako, PhD Professor Department of Psychology University of Maryland Baltimore County Baltimore, Maryland Andrew Campbell, MD Center for Cancer and Blood Disorders Children’s National Health System Associate Professor of Pediatrics George Washington University School of Medicine and Health Sciences Washington, DC Raffaella Colombatti, MD, PhD Physician Azienda Ospedaliera-Università di Padova Department of Womens’ and Child Health Clinic of Pediatric Hematology Oncology Via Giustiniani 3 35129 Padova, Italy

ADVISORY COMMITTEE MEMBERS

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 Deepika Darbari, MD Center for Cancer and Blood Disorders Children’s National Health System Professor of Pediatrics George Washington University School of Medicine and Health Sciences Washington, DC Payal Desai, MD Associate Professor Director of Sickle Cell Enterprise Atrium Health, Levine Cancer Center Charlotte, NC James Eckman, MD Professor Emeritus, Hematology & Medical Oncology Emory University School of Medicine Department of Hematology and Medical Oncology Atlanta, Georgia Mark Gladwin, MD Dean and Professor of Medicine University of Maryland College of Medicine Baltimore, Maryland

Continued on next page. 11

U N I T Y MEDICAL AND RESEARCH

ADVISORY COMMITTEE MEMBERS Continued from Page 11.

Lewis Hsu, MD, PhD Co-Chair, Medical and Research Advisory Committee, Sickle Cell Disease Association of America Chief Medical Officer, Sickle Cell Disease Association of America Director of Pediatric Sickle Cell Professor of Pediatric Hematology-Oncology University of Illinois at Chicago Chicago, Illinois Baba Inusa, MD Professor of Paediatric Haematology Lead Consultant Paediatric Sickle Cell and Thalassaemia Evelina London Children’s Hospital Guy’s and St Thomas’ NHS Foundation Trust Women and Children’s Academic Health Faculty of Life Sciences and Medicine King’s College London, United Kingdom Edward Donnell Ivy, MD, MPH Co-Chair, Medical and Research Advisory Committee, Sickle Cell Disease Association of America Vice Chief Medical Officer, Sickle Cell Disease Assocation of America Health Education Coordinator, Association of Black Cardiologists, Inc. Toronto, Canada 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 Director, Sickle Cell Center for Adults The Johns Hopkins Hospital Baltimore, Maryland Julie Makani, FRCP, PhD Associate Professor Department of Haematology and Blood Transfusion Muhimbili University of Health and Allied Sciences Dar es Salaam, Tanzania Caterina P. Minniti, MD Consulting Hematologist Former Director, Sickle Cell Center Montefiore Health System Bronx, New York Genice T. Nelson, DNP, APRN, ANP-BC Program Director, New England Sickle Cell Institute & Connecticut Bleeding Disorders Programs, UConn Health, Farmington, Connecticut Board Member, Sickle Cell Disease Association of America Wally Smith, MD Professor, Scientific Director, VCU Center on Health Disparities Director, VCU Adult Sickle Cell Program Department of Internal Medicine Division of General Internal Medicine Virginia Commonwealth University Richmond, Virginia

Crawford J. Strunk, MD Director, Sickle Cell Disease and Hemoglobinopathy Clinic Pediatric Hematology/Oncology Program ProMedica Ebeid Children’s Hospital Toledo, Ohio Marsha Treadwell, PhD Director, Sickle Cell Care Coordination Initiative Regional Director, Pacific Sickle Cell Regional Collaborative Professor of Psychiatry and Pediatrics University of California San Francisco Benioff Children’s Hospital Oakland Oakland, California Russell E. Ware, MD, PhD Director, Division of Hematology Co-Director, Cancer and Blood Diseases Institute Director, Global Health Center Marjory J. Johnson Chair of Hematology Translational Research Cincinnati Children’s Professor, UC Department of Pediatrics Cincinnati, Ohio Julie Kanter Washko, MD Associate Professor, Division of Hematology Oncology Director, Adult Sickle Cell Clinic University of Alabama at Birmingham Birmingham, Alabama Wanda Whitten-Shurney, MD CEO & Medical Director Sickle Cell Disease Association, Michigan Chapter Inc. Detroit, Michigan

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 sickle cell disease and related conditions.

THIS IS WHO WE ARE

WE PROMOTE the search for a

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

M O R E I M P O R TA N T LY

WE JOIN with our 50-plus member

organizations and affiliates located in 29 states to collectively serve over 500,000 children and adults living with or impacted by sickle cell disease and their caregivers.

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: www.sicklecelldisease.org/clinical-trial-finder.

WE TRAIN hundreds of Community Health Workers (CHW) 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, 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 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 discussion, advocacy lectures and special events.

WE ADVOCATE so patients 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. We also coalesce around legislative initiatives and use ambassadors to help raise awareness. www.sicklecelldisease.org

#ForceForTheFuture 14

U N I T Y THANK YOU TO OUR

ABSTRACT REVIEWERS The Sickle Cell Disease Association of America thanks everyone who reviewed this year’s research paper abstract submissions:

Miguel Abboud, MD, PhD

Mariam Kayle, PhD, RN

Biree Andemariam, MD

Elizabeth Klings, MD

Nina Anderson, MD

Lakshmana Krishnamurti, MD

Yvonne M. Carroll, RN

Sophie Lanzkron, MD

Dora Clayton-Jones, PhD, RN, CPNP-PC

Gabrielle Lapping-Carr, MD

Deepika Darbari, MD

Genice Nelson, DNP, APRN, ANP-BC Prof

Laura M. De Castro, MD

Franklin Njoku, MD, MPH

Miriam O. Ezenwa, MD

Marlene Peters-Lawrence, BSN, RN, RRT

Marwah Farooqui, MD

Shannon Phillips, RN, PhD

Agatha Gallo, PhD

Kay Saving, MD

Kalpna Gupta, MD

Alyssa Schlenz, PhD

Lewis Hsu, MD, PhD

Sruti Shiva, PhD

E. Donnell Ivy, MD, MPH

Crawford Strunk, MD

Shivi Jain, MD

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U N I T Y TEEN AMBASSADOR

AYA N A L E E J O H N S O N “Sickle cell disease does not define me. I am a warrior living my best life.”

Her Role. As Teen Ambassador, Ayana makes public appearances and acts as an emissary, assisting with education campaigns and securing public and private sector support for the SCDAA mission. She serves as a goodwill ambassador for SCDAA and is a positive role model for teens and other individuals living with sickle cell disease. In addition, she serves as a Youth Legislative Advisor for Delegate Candi Mundon King.

Accomplished. Among her many achievements, Ayana was featured in Suffolk News Herald’s 20 Under 21 and is the recipient of the St. Peter Claver Service and Sickle Cell Activism Award; the Making the Difference – Sickle Cell Champion Warrior Award and Scholarship; and the 2019 Excellence Girls Club Pioneer Award.

Ayana Lee Johnson continues her reign as the 2021-2023 SCDAA National Teen Ambassador during the convention.

Talented. Ayana is a senior at Nansemond River High School and the Governor’s School of the Arts. She is a competitive dancer with many national titles and has participated in summer intensives with the Dance Theatre of Harlem and the Joffrey Ballet School. She also plays violin and competes in pageants. Ayana currently holds the title of Miss Virginia’s Outstanding Teen 2022. 17

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

A YEAR IN REVIEW Sickle Cell Disease Association of America’s

MINDFUL Recognizing MONDAYS 50 Years of Progress

sease f America’s

DFUL DAYS

This year, SCDAA celebrated our 50th anniversary year with special programming and initiatives designed to push us forward. Thank you to our Legacy Sponsor Pfizer for supporting these programs.

Sickle Cell Disease

Association of America’s

MINDFUL MONDAYS

• Mindful Mondays: SCDAA produced a series of short videos to introduce and promote the practice of mindfulness and well-being to those living with sickle cell, their caregivers and to all, through breathwork, affirmations, meditation, gentle movement and mindfulness techniques. On Mondays throughout the year, new sessions were presented by Dr. Marjorie Dejoie-Brewer. • The Sickle Cell Disease Masterclass : SCDAA launched a masterclass speaker series for top SCD leaders to share their expertise on SCD topics from the premise that curative therapies that greatly improve the quality of life for those living with sickle cell are achievable in the near future. The livestreamed series helped SCD warriors, caregivers, providers and others understand the impact these changes may have on our community. Three sessions were held in total: ° Gene Therapy: A Journey Forward (June 22) ° All Things Considered – SCD Treatment: A Personal Choice (Aug. 24) ° The Perfect Red Blood Cell: An SC Dream Redefined (Oct. 12, live at convention)

• Mental Health and Awareness Campaign: SCDAA joined forces with SCD and mental health advocates to create an awareness campaign addressing the fear and stigma associated with seeking mental health help. The campaign includes a toolkit and short videos that will be hosted by prominent and well-known SCD warriors, caregivers and other individuals who have been helped by mental health professionals. Additional mental health resources and information are also included. The message is “I Believe in Therapy.” • Administrative Staff Workshop Pilot Program: This program augments our Community Health Worker Training Program to include a workshop for non-clinical administrative employees new to working in sickle cell disease health care environments. The program is designed to educate, build awareness and provide administrative staff with tools and techniques to enhance the quality of their interactions with the SCD population and enable them to better understand the disease and the unique day-to-day challenges faced by those living with SCD. 18

New Partnerships and Recognitions MedicAlert Foundation teamed up with SCDAA to enhance the safety and well-being of people living with sickle cell disease. The goal of the pilot program launched in September is to improve access to timely, effective emergency care for people experiencing a sickle cell crisis. Participants will be provided with a MedicAlert digital health profile to securely store their health information, treatment and pain plans, medications, physician information, emergency contacts and more. Each participant receives a customized Smart Medical ID Card, which provides easy access to their health information and physician-prescribed pain management plan via a QR code. NFL players supported SCDAA on the field through the My Cause My Cleats program. San Francisco 49ers running back Tevin Coleman and Arizona Cardinals linebacker Markus Golden supported the association by wearing custom-designed cleats with inspirational artwork and messages to raise awareness and engagement around sickle cell disease. SCDAA was pleased to take an active role in promoting blood donation this year by participating in Blood Drives. • SCDAA President & CEO Regina Hartfield supported the National PanHellenic Council of Washington, D.C., and the University of the District of Columbia during a blood drive aimed at boosting diverse blood donations in March. • In April, Regina joined Hemanext and OneBlood for their #Donate4Diversity Blood Drive in Miami Gardens, Florida. SCDAA celebrity ambassador and NFL linebacker Markus Golden and his teammate Victor Dimukeje were also in attendance. During the 3rd Chief Patient Officer Summit in Boston, Massachusetts, SCDAA joined leaders from Novo Nordisk and Genetech for a panel on patient-centered care and the importance of fostering a culture of diversity, equity and inclusion.

National Office Updates Under guidance from SCDAA’s medical team, our office in Hanover, Maryland opened in April for the first time since the pandemic began in 2020! We were overjoyed to welcome our staff, partners and community back into our space once again. 19

N AT I O N A L H I G H L I G H T S Advocacy This year, we saw a great deal of movement and attention toward legislative efforts to improve SCD research and treatment outcomes. SCDAA is proud to work closely with elected officials and stakeholders on these initiatives. Our FY24 Legislative Priorities, developed in collaboration with Sick Cells, encourages: • The passage of the Sickle Cell Disease Comprehensive Care Act, which would direct the Centers of Medicare and Medicaid Services (CMS) to create a demonstration program in up to 10 states to improve access to comprehensive, high-quality outpatient care for SCD warriors enrolled in Medicaid. • $15 million in funding for the Sickle Cell Disease Treatment Demonstration Program (SCDTDP), which helps coordinate service delivery for people with SCD, train health professionals and provide access to genetic counseling and testing. • $25 million in funding for the Centers for Disease Control and Prevention (CDC) Sickle Cell Data Collection Program, which will allow the CDC to continue and expand state public health surveillance and support a national longitudinal registry of all persons with sickle cell disease per the National Academies of Sciences, Engineering and Medicine (NASEM) 2020 report recommendations. SCDAA partnered with Sick Cells and the Sickle Cell Community Consortium to hold the first-ever National SCD Policy Forum in March. Our Virtual Hill Day resulted in over 100 advocates sharing their stories, 148 meetings on the Hill and 29 states represented. These advocates asked for increased funding for the HRSA Sickle Cell Disease Treatment Demonstration and the CDC SCD Data Collection Program. They also requested that offices co-sponsor the Sickle Cell Disease Comprehensive Care Act. Regina Hartfield spoke at a congressional briefing led by the Institute for Gene Therapies. The briefing provided congressional staff, patient advocates, scientific and academic stakeholders and others with important information about gene therapy and needed policy updates. In January, SCDAA joined the National Organization for Rare Disorders (NORD) to celebrate the 40th Anniversary of the Orphan Drug Act on Capitol Hill. The passage of the act marked a landmark moment in the development of treatments and therapies for rare disease.

The SCD C.A.R.E.S. Consortium Last year, SCDAA formed the SCD C.A.R.E.S. (Collaboration of Advocates for Research, Education and Science) Consortium to educate the community about the importance of clinical trials. The Consortium has worked together to create resources that will help warriors and caregivers better understand and navigate clinical trials, including a comprehensive glossary and infographic. We were also proud to welcome new member Afimmune.

Key Research MARAC is composed of influential leaders of many professional groups, who volunteer to advise SCDAA. SCDAA’s Medical and Research Advisory Committee (MARAC); Lewis Hsu, M.D., SCDAA chief medical officer; and Edward Donnell Ivy, M.D., SCDAA vice chief medical officer, are guiding SCDAA into new roles of engagement in research. Over the past year, their areas of focus included: • Broadening discussion of gene therapy for sickle cell disease: Research into gene therapy is rapidly progressing, and SCDAA’s research team has been active in helping the SCD community understand these new therapies and their significance, as well as convening with clinical research sponsors and policy makers. • Expanding research grants: Leadership opened discussion on research collaboration with the hemophilia community and oriented grant writers to sickle cell needs and issues, and MARAC advised on partnerships with clinical researchers in academia and pharmaceutical industry. • Having a seat at the research policy table: Leadership spoke to the National Heart, Lung, and Blood Institute and the American Society of Hematology on behalf of the sickle cell community. • Opening new routes for individuals to have access to research studies: The SCDAA weekly email newsletter includes robust information about survey studies and interventional studies. These complement the information that can be found through the SCDAA Clinical Trial Finder and oneSCDvoice.

Medical and Research Advisory Committee (MARAC) SCDAA’s MARAC monitors unusual research activity and keeps the community apprised of important information. Numerous advisories were produced to respond to COVID-19 concerns and other news including: • The MARAC Advisory Statement: Encouraging Clinical Research Studies • The MARAC Advisory Statement: Influenza • The MARAC Advisory Statement: Penicillin Shortage

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

COMMUNITY HEALTH WORKER TRAINING

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 highquality supervision to CHWs. In 2023, SCDAA trained 39 individuals to support sickle cell warriors as CHWs.

E VA L U A T I O N R E P O R T

The P.O.W.E.R ECHO CHW Training also continues to provide 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, 125 people joined us for P.O.W.E.R ECHO trainings this year.

Sickle Cell Disease Association of America, Inc.

7240 Parkway Drive, Suite 180 • Hanover, Maryland 21076 www.sicklecelldisease.org

June 19: Shine the Light on Sickle Cell In collaboration with SCDAA, SiNERGe, HRSA, advocacy groups, community-based organizations, hospitals, governments and other key shareholders celebrated World Sickle Cell Awareness Day on June 19, as designated by the United Nations. Participants wore red and attended events online and in their communities to promote awareness and advocacy. This year, Maryland Governor Wes Moore signed a proclamation to make June 19, 2023, Sickle Cell Awareness Day in his state.

September 16: 10th Annual Walk with the Stars For the first time since 2019, SCDAA held the Annual Walk with the Stars event in person! Warriors, caregivers, advocates and partners joined us in Baltimore, Maryland for a morning of unity, connection and exercise. Thank you to all the teams that joined to #MoveForSickleCell both in person and virtually. We are one step closer to a universal cure because of your support!

LONZIE LEE JONES

PATIENT ADVOCACY SYMPOSIUM GET INSPIRED. This patient-powered roundtable promotes self-advocacy and sickle cell disease education targeted to improve patient care. Prepare to be engaged, educated, empowered and enriched as our panelists share their life-changing, personal stories of struggle and hope.

PUFF, PUFF, PASS: MEDICAL MARIJUANA AND SICKLE CELL DISEASE October 14 n 10 a.m. EST Moderator: Genice 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.

PANELISTS: Kristen Cox, member engagement coordinator of SCDAA, served as the membership and leadership manager for the American Society of Consultant Pharmacists and at the DiLorenzo Tricare Health Clinic at the Pentagon in Washington, D.C. She began her career as a certified nursing assistant and holds a master’s degree from the University of Maryland School of Pharmacy. Luzibu Chevannes, is a sickle cell warrior who is continuously learning about Sickle Cell and fighting to live her best life. She has been using medical marijuana for over 5 years as a tool to overcome her pain. She is currently working with teens and young adults with sickle cell disease as they transition from pediatric to adult care.

Aaron Turpin, is a sickle cell warrior who dedicated his life to raising awareness of the condition after losing his twin brother to the disease. He understands how difficult it can be to manage life with SCD and is committed to doing everything he can to support the fight against the sickle cell. In addition to serving as a peer leader with the Sickle Cell Association of New Jersey, he is also an actor, brand model and insurance broker.

DeMitrious Wyant is a patient/ advocate with sickle cell type SS. Despite being In and out of the hospital with countless surgeries and blood transfusions, he is a business owner and operator of YOUNG BLACK AND TALENTED LLC. DeMitrious is a published writer of music that expresses his life with SCD and hosts the podcast “The Souljah Strong Way” to educate the world on sickle cell and healthy alternatives to live well with the disease.

HONOR L E C T U R E S CHARLES F. WHITTEN, MD, and CLARICE D. REID, 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. The Sickle Cell Disease Association of America honors them by honoring others, in their name, who have made significant contributions to the sickle cell community.

CHARLES F. WHITTEN, MD, was the cofounder and president emeritus of the Sickle Cell Disease Association of America, Inc. His dedication and commitment to SCDAA and to those with sickle cell disease will be forever respected and cherished. As a pediatric hematologist, Dr. Whitten was among the first to develop and insist on newborn screening for sickle cell disease, which is now performed worldwide. In 1974, he formed the Sickle Cell Detection and Information Center in Detroit, MI, the most comprehensive community program in the country. He also created color-coded “Whitten Dice” to educate couples about the genetic risks of having children with sickle cell disease.

CLARICE D. REID, MD, began her impressive federal career at the Health Services and Mental Health Administration (HSMHA) in 1972, 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 serviceoriented programs with the clinical and basic research programs at the National Institutes of Health (NIH). The director of the NHLBI/NIH recruited Dr. Reid on a detail from HSMHA 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.

HONOR L E C T U R E S

KWAKU OHENE-FREMPONG, MD

The Kwaku Ohene-Frempong, MD, Memorial Symposium is given annually at SCDAA’s National Convention. Dr. Ohene-Frempong passed away on May 7, 2022. He was a true leader in the sickle cell community and dedicated his life and career to working with SCD. 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. The Sickle Cell Disease Association of America is proud to honor his memory by elevating the voices and efforts of those who dare to make a difference.

KWAKU OHENEFREMPONG, MD, was born in Ghana, and his record of excellence as a student-athlete 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 emeritus professor of Pediatrics at the Perelman School of Medicine at the University of Pennsylvania. Dr. Ohene-Frempong also founded the Sickle Cell Foundation of Ghana and was a founding member of the Global Sickle Cell Disease Network. 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. Dr. Ohene-Fremong held many roles on the Sickle Cell Disease Association of America 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 L E C T U R E S 2023 CHARLES F. WHITTEN, MD, MEMORIAL LECTURE Vence Bonham, JD Moderator: Wanda Whitten-Shurney, MD

LEAVE NO ONE BEHIND October 12 n 11:45 a.m. EST Vence Bonham, JD, is acting deputy director, associate investigator and member of the senior leadership team of the National Human Genome Research Institute with the National Institutes of Health. Mr. Bonham provides leadership for the institute’s health equity and workforce diversity programs and works in partnership across NIH to promote the mission of the institute. He received his Bachelor of Arts from James Madison College at Michigan State University and his Juris Doctor degree from the Moritz College of Law at Ohio State University. Mr. Bonham was a fellow in the American Association of Medical Colleges Health Services Research Fellowship Program. Mr. Bonham was a tenured faculty member at Michigan State University with appointments in the Colleges of Medicine and Law. He is currently an associate investigator in the National Human Genome Research Institute (NHGRI) within the Division of Intramural Research’s Social and Behavioral Research Branch. He leads the Health Disparities Unit, which investigates the equitable integration of new genomic knowledge and precision medicine into clinical settings. His research focuses primarily on the social implications of new genomic knowledge, particularly in communities of color. He studies how genomics influences the use of the constructs of race and ethnicity in biomedical research and clinical care and the role of genomics in exacerbating or ameliorating health inequities. The Bonham group also studies sickle cell disease, a condition that will be impacted by emerging curative genomic technologies but has faced significant health disparities both in the United States and globally.

ADVOC ACY U P D A T E

NATIONAL SICKLE CELL DISEASE ADVOCACY UPDATE Ellen Riker and Leslie Brady

SICKLE CELL DISEASE IN THE LEGISLATIVE LIMELIGHT October 12 n 1:15 p.m. EST It is an exciting time for the sickle cell community on Capitol Hill. With several pieces of active legislation related to improving the lives of individuals living with sickle cell disease, Congress is taking action to address issues that for too long have been neglected. At the same time, with the end of the public health emergency individuals are at risk of losing Medicaid coverage. Join us to hear from SCDAA’s federal policy advisors about the SCD and other important health-related bills and what you need to know regarding Medicaid policies in your state.

Ellen Riker is a principal with the Artemis Policy Group, an association management and advocacy firm she established with Johanna Gray and Elizabeth Karan in April 2020 in Washington, D.C. Ellen serves as a federal policy advisor to the Sickle Cell Disease Association of America. For over 30 years, Ellen has managed federal strategies for corporate and nonprofit organizations, specializing in public and private insurance reimbursement and coverage policies, biomedical and health services research, and public health programs. Ellen has worked with the many agencies of the Department of Health and Human Services and has been involved in the development of legislation coming out of the House and Senate committees with jurisdiction over Medicare, Medicaid, and public health service programs. 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. 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-NY26), where her last title was health policy advisor. 27

HONOR L E C T U R E S

2023 KWAKU OHENE-FREMPONG, MD, MEMORIAL SYMPOSIUM Oladipo Cole, MD Moderator: Lewis Hsu, MD, PhD

THE JOURNEY WITH MANY ROLES: FROM SIC KNESS TO INSIGHT October 13 n 12:45 p.m. EST Oladipo Cole, MD, will discuss his journey and his many roles: sickle cell warrior, doctor, clinical researcher, advocate and minister. He seeks to use his abilities to improve care for sickle cell patients through research, advocacy and education. Dr. Cole received his medical degree from Saint Matthew’s University School of Medicine, earned concurrently with a Master of Business Administration with a concentration in health care administration. Following graduation, he embarked on a one-year NIHsponsored post-doctoral research fellowship at the University of Illinois at Chicago, where he investigated unaffiliated sickle cell patients as part of the Sickle Cell Disease Implementation Consortium, under the guidance of Drs. Victor Gordeuk and Lewis Hsu. Subsequently, he completed his internal medicine residency at Florida Atlantic University. Currently, Dr. Cole is in his third year as an adult hematology/oncology fellow at Washington University School of Medicine in St. Louis, Missouri. His career passion lies in providing compassionate care to individuals with sickle cell disease, with a research focus on groundbreaking curative therapies such as transplant and gene therapy. In 2024, he will assume the role of assistant professor and associate director of the New England Sickle Cell Institute and the Connecticut Bleeding Disorders Center at the Neag Comprehensive Cancer Center, working alongside Dr. Biree Andemariam at the University of Connecticut.

2023 CLARICE D. REID, MD, LECTURE Foluso “Joy” Ogunsile, MD Moderator: Lewis Hsu, MD

PHYSICAL ACTIVIT Y AND SICKLE CELL: LET’S BUST SOME MY THS! October 13 n 1:30 p.m. EST Foluso “Joy” Ogunsile, MD, grew up in Greenville, SC. Her family is of Nigerian descent. She studied biology and African American studies at Duke University in Durham, NC. After college, she completed a year of intramural research year at the National Institutes of Health. She received her medical degree from the University of North Carolina at Chapel Hill and completed a combined internal medicine and pediatric residency at Vanderbilt University in Nashville, TN. After witnessing significant disparities in the health care for adults with SCD, she decided to complete a fellowship in hematology at The Johns Hopkins University with the sole purpose of studying sickle cell disease. After her fellowship, for three years she worked at the University of Alabama in Birmingham, AL, at a comprehensive sickle cell center. She completed research in nutrition and exercise in SCD and won a competitive investigative fellowship during her time at the University of Alabama. Her passion is to improve the quality of life and lifespan for warriors with sickle cell disease through optimum care and clinical research.

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 OF AMERICA M A S T E R C L A S S

THE PERFECT RED BLOOD CELL: A SICKLE CELL DREAM REDEFINED October 12 n 2:15 p.m. EST Moderator: Kim Smith-Whitley, MD, is global chief medical affairs officer for patient advocacy and external collaborations at Pfizer Inc. Previously, Dr. Smith-Whitley was the clinical director of hematology and director of the Comprehensive Sickle Cell Center at Children’s Hospital of Philadelphia where her research and clinical work centered on sickle cell disease. She is professor emeritus of pediatrics at the Perelman School of Medicine, University of Pennsylvania, and former chief medical officer of the Sickle Cell Disease Association of America, where she continues to serve on the board.

PANELISTS: Vence Bonham, JD, is acting deputy director, associate investigator and member of the senior leadership team of the National Human Genome Research Institute with the National Institutes of Health. Mr. Bonham provides leadership for the institute’s health equity and workforce diversity programs and works in partnership across NIH to promote the mission of the institute.

André Harris is a sickle cell warrior and Ph.D. student at the University of Houston’s Graduate College of Social Work. As a dedicated advocate, he uses his platforms to raise SCD awareness and discuss social determinants of health. He has held positions on several advisory boards for sickle cell and rare disease stakeholders. He holds a Master of Social Work degree from the University of Houston.

Teonna Woolford is the founder and CEO of the Sickle Cell Reproductive Health Education Directive (SC RED). She is a sickle cell warrior and advocate who has had opportunities to discuss the cause with world leaders, including former First Lady Michelle Obama and the late Congressman John Lewis. Teonna has contributed to publications and served on working committees with the American Society of Hematology and the National Heart, Lung, and Blood Institute.

2023 AWARD W I N N E R S

2023 Champion Award Ted Love, MD Ted Love, MD, is the chair of the Board of Directors at the Biotechnology Innovation Organization (BIO). Dr. Love served as president and chief executive officer of Global Blood Therapeutics (GBT) from June 2014 until October 2023, when the company was acquired by Pfizer. During his tenure at GBT, Dr. Love led the company from a pre-clinical start-up into a global commercial company with a pipeline of innovative therapies focused on sickle cell disease.

2023 Community Health Worker Award Darlene Young, Sickle Cell Association of New Jersey Darlene Young is a community outreach coordinator for the Sickle Cell Association of New Jersey (SCANJ). She is a certified SCD hemoglobinopathy counselor, a community health worker and a master trainer in both the Chronic Disease Self-Management and Diabetes Self-Management programs. She was a founding board member of SCNAJ and serves as an advisory committee member for the Sickle Cell Reproductive Education Directive (SCRED). Darlene is also an ordained and licensed minister and holds a bachelor’s degree from Morgan State University.

2023 Lifetime Achievement Awards Miguel Abboud, MD Miguel R. Abboud, MD, is a pediatric hematologist-oncologist and has practiced medicine for more than 20 years. He was the first medical director of the Children’s Cancer Center of Lebanon, where he established a bone marrow transplant service, limb salvage surgery and sickle cell disease programs as well as an acute lymphoblastic leukemia research protocol. He has been involved in many SCD awareness campaigns in the US, Lebanon and Middle East, including Stop the Stroke Before it Stops the Child in South Carlina. He is a consultant on multiple SCD multicenter clinical trials protocol development and has over 190 publications in peer reviewed journals. He completed his residency at New York Presbyterian Hospital and holds a medical degree from American University of Beirut Faculty of Medicine.

2023 President’s Award Derek Robinson, Maryland Sickle Cell Disease Association Derek Robertson is president of the Maryland Sickle Cell Disease Association. Derek and his wife, Shantá, have three sons, two of whom have sickle cell disease (SCD). He is a member of the National Academies of Sciences, Engineering and Medicine Forum on Regenerative Medicine and a past member of the NIH’s National Heart, Lung, and Blood Institute’s SCD Advisory Committee. He served on the federal Maternal and Child Health Bureau’s Newborn Screening Expert Panel. Derek is an attorney specializing in the federal 340B Drug Pricing Discount Program and has worked extensively with various institutions on grants management and program income. 31

2023 AWARD W I N N E R S

2023 Chairman’s Awards David Braxton and JaKela Walker David Braxton leads a Global Procurement team at Bank of America supporting global contingent labor, consumer & small business banking and loans, and wealth management operations. He designs and executes strategic sourcing strategies, leads third-party cost savings initiatives, and facilitates robust third-party risk assessments. David is a subject matter expert for the bank as it relates to the implementation of third-party outsourcing/offshoring solutions as well as other enterprise strategic third-party sourcing projects. JaKela Walker is senior finance director and controller for DSM, a multinational company specializing in nutrition, health and sustainable living. Previously, she served in finance for DENTSPLY International, Burke Counseling Services and Eli Lilly and Co. Her volunteer work includes serving on boards and committees for the Forman S. Acton Educational Foundation, Wings for Success and Tri-State Diversity Council. She studied finance and international business at Howard University. JaKela serves as treasurer of the Sickle Cell Disease Association of America board of directors.

2023 Advocacy Awards Ashley Valentine and Marqus Valentine (in Memoriam) Ashley Valentine co-founder and president of Sick Cells, is a recognized leader in the sickle cell community. With a professional background as a policy research analyst for federal clients, including Medicaid, Medicare, and the CDC, Ashley’s passionate advocacy is deeply rooted in her personal connection to sickle cell disease, driven by her brother Marqus. Together, they have achieved significant milestones, such as leading the SCD community in its first-ever ICER review, forming impactful coalitions to advocate for federal legislation, testifying at the FDA to emphasize the significance of drug development, and more. Marqus Valentine devoted his life to understanding others, uplifting his family and friends, and spreading awareness about sickle cell disease. As the co-founder and inspiration for Sick Cells, Marqus believed that his life and the pain he lived with every day was for a purpose. He shared his story with anyone who would listen, ranging from his individual friends and family, to his medical team, in Washington, DC, and even abroad. Marqus shared every new experience, such as training his own service dog and therapeutic riding, so others could participate. He believed all persons with SCD should have the opportunity to engage in a wide range of activities. His purpose was to improve the lives of current and future sickle cell warriors and their families.

SCDAA THANKS SILVER SPONSOR

We appreciate your ongoing support!

SCDAA THANKS SILVER SPONSOR Global Rare Diseases

We appreciate your ongoing support!

LOC AL C H A P T E R S ALABAMA • North Alabama Sickle Cell Foundation Inc. – Huntsville • SCDAA – Central Alabama Chapter – Birmingham • SCDAA – Mobile Chapter Inc. • SCDAA – West Alabama Chapter Inc. – Northport • Sickle Cell Foundation of Greater Montgomery Inc. • Southeast Alabama Sickle Cell Association Inc. – Tuskegee CALIFORNIA • Cayenne Wellness – Glendale COLORADO • Colorado Sickle Cell Association – Denver CONNECTICUT • Citizens for Quality Sickle Cell Care – New Britain/Hartford • SCDAA – Southern Connecticut Inc.– Bridgeport/New Haven DELAWARE • Tova Community Health Inc. – Wilmington FLORIDA • Levi Long Sickle Cell Association Inc.– Daytona Beach • SCDAA – Escambia and Santa Rosa Counties – Pensacola • SCDAA – Miami-Dade County Chapter Inc. • Sickle Cell Association of Florida – Tampa • Sickle Cell Association of Hillsborough County • Sickle Cell Disease Association St. Petersburg Chapter • Sickle Cell Disease Association of Broward County Inc. • Sickle Cell Disease Foundation of Palm Beach County & Treasure Coast • Sickle Cell Foundation of Tallahassee • Sickle Cell Medical Advocacy Inc. – Orlando GEORGIA • Sickle Cell Foundation of Georgia – Atlanta

ILLINOIS • Sick Cells – Lisle • Sickle Cell Disease Association of Illinois – Chicago INDIANA • Martin Center Sickle Cell Initiative – Indianapolis KANSAS • Uriel E. Owens Sickle Cell Disease Association of the Midwest – Kansas City LOUISIANA • Northeast Louisiana Sickle Cell Anemia Foundation Inc. – Monroe • Sickle Cell Disease Northwest Louisiana – Shreveport MARYLAND • Association or the Prevention of Sickle Cell Anemia Inc. — Harford/Cecil Counties and Eastern Shore – Aberdeen • The Maryland Sickle Cell Disease Association – Columbia MASSACHUSETTS • Greater Boston Sickle Cell Disease Association – Dorchester MICHIGAN • SCDAA – Michigan Chapter Inc. – Detroit MINNESOTA • Sickle Cell Foundation of Minnesota – Minneapolis MISSOURI • Sickle Cell Association of St. Louis – St. Louis NEVADA • Bridging the Gap – The 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 35

LOC AL C H A P T E R S NEW YORK • Falling Angels Sickle Cell Foundation – Garnerville • Queens Sickle Cell Advocacy Network Inc. – Queens Village • Sickle Cell Thalassemia Patients Network (SCTPN) NORTH CAROLINA • Bridges Pointe Sickle Cell Foundation – Durham • Piedmont Health Services and Sickle Cell Agency – Greensboro OHIO • Ohio Sickle Cell and Health Association – Columbus OKLAHOMA • Supporters of Families with Sickle Cell Disease – Tulsa OREGON • Sickle Cell Foundation of Oregon – Portland PENNSYLVANIA • Childrens Sickle Cell Foundation – 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 • Sickle Cell Association of Texas Marc Thomas Foundation – Austin VIRGINIA • Sickle Cell Association Inc. – Norfolk

SCDAA’s CLINICAL TRIAL FINDER SEARCH WEBSITE + CONNECT TO CLINICAL TRIALS The Sickle Cell Disease Association of America’s Clinical Trial Finder is a centralized, simple-to-navigate resource that helps people with sickle cell disease, their families and caregivers find clinical trials.

www.sicklecelldisease.org/ clinical-trial-finder Download from the Apple or Android app store today!

Your participation helps guide these breakthroughs and also gives you access to these new treatments before they are available to the public. Search for trials by keyword, location, study type and phase — in one place.

U N I T Y THANK YOU

S C D C.A .R.E.S. C O N S O R T I U M MEMBERS 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. The Sickle Cell Disease Association of America, 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.

U N I T Y THE NOD TO “NAZ” EXHIBIT

A TRIBUTE TO ARTIST HERTZ NAZAIRE I N T H E P E N TAG O N R O O M

The Sickle Cell Disease Association of America will exhibit the artwork of Hertz Nazaire at the convention. Known for his advocacy work and “Finding Your Colors” adult coloring book series, Hertz created mixed-media visual art reflective of his personal experiences with pain and sickle cell disease. He died of sickle cell-related complications at the age of 48 in 2021.

Hertz immigrated from Port-auPrince, Haiti, when he was eight years old. His childhood in Haiti inspired the colors in his large, vibrant paintings, he said. Hertz began painting in New York City, where he lived with his mother before moving to Bridgeport, Connecticut. He studied art at The Art Institute of Fort Lauderdale and University of Bridgeport. Be sure to visit the Art exhibit funded by:

art exhibit at the Convention! 39

U N I T Y THANK YOU

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IN-KIND National African American Quilt Guild

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Make a donation in honor of a loved one. You may

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Support SCDAA through your company’s annual

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I am working everyday to make sure that I speak up about sickle cell disease as much as possible to help people understand it. Kevin Wake

Living with sickle cell disease

Vertex is committed to people living with sickle cell disease, and we are driven to make a difference. We know that committing to you, the sickle cell community, goes beyond our science. It’s about showing up and partnering with the community to work together toward meaningful change. Visit vrtx.com to learn more and follow us on social media. Vertex and the Vertex triangle logo are registered trademarks of Vertex Pharmaceuticals Incorporated. ©2023 Vertex Pharmaceuticals Incorporated | VXR-GL-00-2300096 (v1.0) | 09/2023

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