SCDAA 52nd Annual Convention

S I C K L E C E L L D I S E AS E ASS O C I AT I O N OF A M E R I C A ®

52ND ANNUAL NATIONAL CONVENTION

M OM E N T U M : A Journey into a New Sickle Cell Era

October 23-26 | Loews Atlanta Hotel Atlanta, Georgia

Legacy Sponsor

Visionary Sponsor

Driving the the community’s community’s Driving mission forward. forward. mission

The sickle cell community has always shown up.

The sickle cell community has always shown up.

We’re proud to partner with inspiring people We’re proud to partner with inspiring people as we work together to improve the lives as we work together to improve the lives of those impacted by sickle cell. of those impacted by sickle cell.

To learn more, visit TogetherForRare.com To learn more, visit TogetherForRare.com

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

TABLE OF

CONTENTS

President’s Greeting....................................................... 5 Chief Medical Officer’s Greeting................................. 6 Convention and Gala Committees............................... 8 SCDAA Board of Directors........................................... 9 Advisory Board............................................................10 Who We Are.................................................................11 MARAC Members....................................................... 12 Abstract Reviewers....................................................... 14 National Highlights...................................................... 16 Lonzie Lee Jones Symposium......................................23 Honor Lectures.............................................................24 Advocacy Update.......................................................30 SCDAA Masterclass....................................................33 Awards..........................................................................34 The Nod To “Naz” Art Exhibit....................................36 SCDAA Convention Store...........................................37 SCDAA Members........................................................38 SCDAA’s Clinical Trial Finder..................................... 41 SCD C.A.R.E.S. Consortium Members.......................42

FOLLOW US! @scdaa

Ways to Give...............................................................43 Our Sponsors...............................................................44

@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.

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N AT I O N A L STA F F

M OM ENT UM Regina Hartfield

President/Chief Executive Officer

Reginald Hart, Jr.

Chief Financial Officer

Erika Cartledge

Director of Development and Stakeholder Engagement

Kevin Amado, MPA

O U R M I SS I O N

Senior Community Impact and Education Manager

Kristen Cox, MSc

Member Engagement Coordinator

Stuart Pumphrey

Staff Accountant

Phoelicia Blagmon

Executive Administrative Assistant

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

PUBLISHER: Sickle Cell Disease Association of America, Inc. EDITOR AND GRAPHIC DESIGN: Bonnie Heneson Communications, Inc.

quality of life and raise public consciousness while advancing the search for a

7240 Parkway Drive, Suite 180 Hanover, MD 21076 410.528.1555 (office) | 410.528.1495 (fax) 4

info@sicklecelldisease.org | sicklecelldisease.org

universal cure.

P R E S I D E N T ’S G R E E T I N G IT IS MY PLEASURE TO WELCOME YOU TO SCDAA’S 52ND ANNUAL NATIONAL 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.

When I think of this past year, I think of breakthroughs and setbacks. I think of joy and frustration. Excitement and apprehension. The approvals of two gene therapies in December 2023 pushed us toward a new potentially curative era in sickle cell disease treatment, but not everyone will benefit from these advances. There is still much work to be done. But one thing is for certain – we are picking up momentum in the search for a universal cure and a pain-free future. Can you feel the energy building?

It is still such a joy to be with you, and I hope that you get the chance to explore and enjoy Atlanta while you are here.

We would like to extend a special thank you to the Sickle Cell Foundation of Georgia (SCFG) for their hospitality and partnership as we visit their home state. To the many volunteers who have helped us bring our convention to life, we extend our deepest gratitude.

This year, our convention topics take stock of where we are in the sickle cell space and where we are headed. Hear keynote speaker Dr. Wally R. Smith’s vision for a medical home for adults with sickle cell disease. Discover what the patient-facing guidelines for adults are from Lori Crosby, PsyD. Explore what it means to be a sickle cell carrier and live with the trait from Tilicia Mayo-Gamble, PhD. Once again, we invite you to experience our iconic sessions, like Sickle Cell 101 with Dr. Wanda Whitten-Shurney and the Lonzie Lee Jones Patient Advocacy Symposium. Gain valuable insights during our masterclass on the future of sickle cell. Follow a specialized programming track to learn more about the topics that matter the most to you – whether you are a warrior, health care provider or community advocate.

Over the past year, the work of the late warrior and artist Hertz Nazaire has touched people across the country through the Nod to “Naz” Traveling Exhibit. After installations in Boston, Massachusetts, in April and Torrance, California, in September, we are proud to welcome the collection to our convention for the second time. Attend the grand opening on Thursday evening and take time to view key pieces from his vast collection.

Put on your dancing shoes and join us on Friday night for our annual gala. Every year, our community earns the title of “best dressed” during this evening of elegance and comradery.

Good food, fun entertainment and well-deserved awards are promised during this must-attend event.

Finally, on Saturday afternoon, SCFG is offering a tour of their new Sickle Cell Sanctuary, a cutting-edge wellness space that provides a variety of alternative health services to complement traditional treatment. Don’t miss this exciting opportunity to explore the resources available to this local community! Ask an SCDAA staff member or volunteer about how to attend this special event.

On behalf of the SCDAA board of directors, national office staff and our member organizations, thank you for joining us. I hope you enjoy the convention!

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

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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 joining us for “Momentum: A Journey into a New Sickle Cell Era” at the 52nd Annual National Convention.

This past year is one that I can only describe as momentous. The FDA approvals of two gene therapy treatments in December 2023 sent shockwaves through the scientific and medical communities. I’ve been taking care of kids with sickle cell for over 30 years, and I’ve been waiting for something like this for a long, long time.

But this breakthrough is far from cut and dry. Those who work closely with individuals with sickle cell understand the immense promise and significant barriers we now face – and the work that is yet to be done.

In light of the approvals, SCDAA worked closely with our Medical and Research Advisory Committee (MARAC) to gather information and educate the community on what this could mean for treatment. We were proud to be on the forefront as this information was disseminated. Our statement on gene therapy and our warrior FAQs have been viewed thousands of times, and we were able to work with national media to educate the public on the impact of this historic decision. I encourage you to join me at our Masterclass on Saturday to learn more about what is next and what the future holds for sickle cell disease.

In January, the Centers for Medicare and Medicaid Innovation (CMMI) announced the launch of their new Cell and Gene Therapy Access Model, a demonstration aimed at improving access to cell and gene therapy products in the Medicaid program. CMMI chose sickle cell disease as the first indication for the model. We continue to monitor and provide education on this promising effort.

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SCDAA also took an active approach to addressing the recent withdrawal of Voxelotor (Oxbryta®). MARAC developed a statement to help provide broad access to the publicly available information, although the information was limited at the time. We hosted a virtual meeting with the National Alliance of Sickle Cell Centers to provide crucial updates to our member organizations and health care providers. We also partnered with the Sickle Cell Community Consortium to host a three-part webinar for warriors and caregivers to educate on clinical trials and the FDA approval process, as well provide an opportunity to hear from Pfizer representatives.

MARAC continues to support well-informed participation in clinical research, because this is the pathway for progress in sickle cell disease. Transparent communication is crucial for building trust among sickle cell community members.

Our medical leadership team remains connected with key stakeholders, researchers and elected officials as we support the warrior community. We are dedicated to advancing the understanding of this condition and advocating for evidence-based approaches to treatment.

We hope that you enjoy the Annual National Convention.

Know that here you are surrounded by those who understand. We see your struggles, and we celebrate your accomplishments. Together, we will move boldly with momentum into this new sickle cell era. Onward we go!

Lewis Hsu, MD, PhD Chief Medical Officer Sickle Cell Disease Association of America, Inc.

®

Join us for a

G A L A Celebration Friday, October 25 | 7:30 p.m.

Ellington Ballroom Join us for a fun-filled evening of dinner and dancing!

Legacy Sponsor:

Visionary Sponsor:

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T H A N K YO U T O O U R COM M I T T E E S

M OM ENT UM 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 R. Abboud, MD, PhD Mary Bentley LaMar Raffaella Colombatti, MD, PhD Melissa Creary, PhD, MPH Reginald Hart, Jr. Regina Hartfield TaLana Hill-Hughes, MPH Lewis Hsu, MD, PhD Baba Inusa, MD Edward Donnell Ivy, MD, MPH

CONVENTION PLANNING C OM M I T T E E C H A I R S Thomas Johnson, JD

Tabatha McGee Genice T. Nelson, DNP, APRN, ANP-BC Annie Ross-Womack Natasha Thomas Kenneth Thorpe, PhD, MA Wanda Whitten-Shurney, MD

Kim Smith-Whitley, MD

GA L A C OM M I T T E E C H A I R Bernie Lawrence-Watkins, JD

GALA COMMITTEE:

Kathy Greer Andrea Hart Regina Hartfield Angela Johnson, DDS Susan Sullivan

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M E E T O U R BOA R D OF D I R E C TO R S

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

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

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

Bernie Lawrence-Watkins, Esq Board Secretary Principal Attorney B. Lawrence Watkins & Associates 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. Toronto, ON

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

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

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

Continued on next page.

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B OA R D O F D I R E C T O R S Continued from Page 9.

A DV I S O RY B OA R D Christopher Hollins, MBA Executive Vice President Strategic Acquiring Partnerships WorldPay, Inc. Atlanta, GA

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

Kimberly Clare Manager, Accounting Controls and Compliance American-Speech-Language-Hearing Association (ASHA) David Braxton Senior Vice President Global Third Party Program Bank of America Carol McFarland Director of Development, University Strategic Initiatives Howard University

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

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

Genice T. Nelson, DNP, APRN, ANP-BC Program Director, New England Sickle Cell Institute and 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 Maureen Regan Partner PeerSourcing Solutions

JaKela Walker Finance Director and Global Financial Controller DSM BioMedical, Inc. Exton, PA 10

Chris Ruffin, Jr. Senior News Producer ABC24 TV Memphis

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.

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 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 ClinicalTrial 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 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 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. sicklecelldisease.org 11

M OM ENT UM MEDICAL AND RESEARCH ADVISORY COMMIT TEE MEMBERS 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 Director, New England Sickle Cell Institute Professor of Medicine University of Connecticut Health Farmington, Connecticut 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 Melissa Creary, PhD, MPH Assistant Professor, Health Management and Policy School of Public Health University of Michigan Ann Arbor, MI

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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 Lewis Hsu, MD, PhD Chair, Medical and Research Advisory Committee, Sickle Cell Disease Association of America Chief Medical Officer, Sickle Cell Disease Association of America Interim Chief of Pediatric Hematology-Oncology Director of Pediatric Sickle Cell Professor of Pediatric Hematology-Oncology University of Illinois at Chicago Chicago, Illinois

A JO URN EY I N TO A N E W SI C K L E C EL L ERA

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 Vice Chief Medical Officer, Sickle Cell Disease Association of America, Inc. 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 and Connecticut Bleeding Disorders Programs UConn Health, Farmington, Connecticut Board Member, Sickle Cell Disease Association of America, Inc. 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 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 and Medical Director Sickle Cell Disease Association of America, Michigan Chapter, Inc. Detroit, Michigan

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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:

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Miguel Abboud, MD, PhD

Punam Malik, MD

Ofelia Alvarez, MD

Caterina P. Minniti, MD

Biree Andemariam, MD

Genice T. Nelson, DNP, APRN, ANP-BC

Nina Anderson, MD

Franklin Njoku, MD, MPH

Andrew Campbell, MD

Enrico Novelli, MD, MS

Sonali Chaudhury, MD

Isaac Odame, MD

Deepika Darbari, MD

Joy Ogunsile, MD

Laura De Castro, MD

Chavis Patterson, PhD

James Eckman, MD

Radhika Peddinti, MD

Marwah Farooqui, MD

Shannon Phillips, RN, PhD

Beatrice Gee, MD

Allan Platt, MD

Victor Gordeuk, MD

Insia Rizvi, MD

Nancy Green, MD

Keesha Roach, MD

Kisha Hampton, MPH

Santosh Saraf, MD

Lewis Hsu, MD, PhD

Kay Saving, MD

Edward Donnell Ivy, MD, MPH

Sruti Shiva, PhD

Sara Jacobs, MD

Lisa Shook-Chiles, MA, MCHES, CCP

Cheedy Jaja, PhD, MPH, MSN, PMHNP-BC, APRN, FAAN

Wally Smith, MD

Patricia Kavanagh, MD

Alexis Thompson, MD, MPH

Elizabeth Klings, MD

Gentry R. Wilkerson, MD

Gabrielle Lapping-Carr, MD

Katherine Wood, PhD

Robert Liem, MD

Paula Tanabe, MD

Mansi Thakkar Associate Scientist II Editas Medicine

EDITAS IS TRANSFORMING MEDICINE

We are harnessing the power and potential of gene editing to develop medicines for people living with serious diseases around the world. Visit us at: www.editasmedicine.com.

SCDAA THANKS SILVER SPONSOR

We appreciate your ongoing support!

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

A Year in Review Gene Therapy is Approved for Sickle Cell Disease In December of 2023, the Food and Drug Administration made a landmark decision to approve two types of gene therapy to treat sickle cell disease. These potentially curative therapies are the first of their kind available to members of our community. SCDAA and our Medical and Research Advisory Committee (MARAC) worked closely with partners across the health and social services sectors to educate and inform as we moved into a new era of sickle cell treatments.

Over 400 media appearances as the national voice on gene therapy in print, radio and TV from December 2023 to September 2024 across the United States.

Over 435 million readers, viewers and listeners reached.

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Warrior FAQs

SCDAA Statement on Approval

Over 5,000 views

Over 3,000 views

N AT I O N A L H I G H L I G H T S Specialized Programming Mindful Mondays: Our wellness series launched season two this year with new guest facilitators. These short videos introduce and promote the practice of mindfulness and well-being. Mindful Mondays is sponsored by Pfizer and Vertex.

The Sickle Cell Disease Masterclass: Following a successful first 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 and Vertex.

2024 sessions included: ° Global Implications of Gene Therapy: How You Can Prepare ° Anemia Falciforme: La Experiencia Latina (Sickle Cell Disease: The Latino Experience) ° What Does the Future Hold for Sickle Cell Disease?

Mental Health & Wellness Initiative: Launched in October 2023, this effort seeks to help sickle cell warriors, caregivers and health care workers understand and take care of their mental health.

A comprehensive toolkit was created, and the “I Believe in Therapy” campaign highlights voices from across the country. The initiative is sponsored by Pfizer and Vertex.

Nod to “Naz” Traveling Exhibit: SCDAA brought the work of the late artist Hertz Nazaire to locations across the country this year through the Nod to “Naz” Traveling Exhibit. Over 15 rarely and never-before-seen pieces of art were showcased during the following events: ° A Tribute to Artist Hertz Nazaire (Boston, Massachusetts) ° Cayenne Wellness Center’s Annual Sickle Cell Disease Educational Summit (Torrance, California) ° SCDAA’s 52nd Annual National Convention (Atlanta, Georgia) The exhibit is sponsored by Agios and supported by Vertex.

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N AT I O N A L H I G H L I G H T S Advocacy In January, the Centers for Medicare and Medicaid Services (CMS) and the Center for Medicare and Medicaid Innovation (CMMI) announced that SCD will be the first focus of the new Cell and Gene Therapy (CGT) Access Model. The intent of the model is to help facilitate access to the two approved gene therapies for SCD for individuals insured by Medicaid. SCDAA released a summary of the CGT model as well as some talking points to help our member organizations and partners better understand and talk about the model.

On the Hill In May, SCDAA held its Advocacy Days. Our member organizations coalesced on Capitol Hill to meet with representatives and share why sickle cell matters. We asked for support on three pieces of legislation: • The Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act (H.R. 3884/S.1852) would reauthorize HRSA’s Sickle Cell Disease Treatment Demonstration Program from 2024 through 2028.

• The Sickle Cell Care Expansion Act (H.R. 3100/ S.1423) would authorize loan repayment and scholarships under the National Health Service Corps to physicians that care for patients and participate in SCD research.

• The Sickle Cell Disease Comprehensive Care Act (H.R. 7432) would allow states to establish health homes for Medicaid beneficiaries with sickle cell disease.

13 SCDAA Member Organizations 11 Different States Represented 23 Office Meetings

RESULT:

Representative Jonathan Jackson, a Democrat from Illinois’ first district, cosponsored the Sickle Cell Care Expansion Act (H.R. 3100).

In May, SCDAA joined the National Medical Association, the American Medical Association, the American Association of Medical Colleges and other groups in advocating for DEI programs in medical institutions. In a statement, the association emphasized the need for explicit education of SCD and called upon medical school admissions offices to actively work toward creating diverse environments.

In early 2024, SCDAA sent a letter to the Social Security Administration (SSA) urging its entities to review and update the disability eligibility criteria for SCD. The administration responded favorably to the request, and although the process of updating the criteria may take several years, we are pleased that the SSA continues to reach out to our community for more information.

In the fall, we continued to advocate for disability benefits by sending a letter to the sponsors of the Accelerating Kids’ Access to Care Act (H.R. 4758/ S. 2372) announcing SCDAA’s support of this legislation. The bill would help children living with medically complex conditions, like sickle cell disease, who are insured by Medicaid or the Children’s Health Insurance Program (CHIP), to access care out-of-state faster by alleviating administrative burdens and streamlining the enrollment process for providers.

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N AT I O N A L H I G H L I G H T S Events January 2024: SCDAA Open House SCDAA welcomed member organizations from across the country to our office for an open house! We spent two days brainstorming, planning and learning more about the unique services each group provides.

February 2024: $15K in a Day Campaign On Rare Disease Day, SCDAA rallied our community to make a collective impact on the lives of those affected by sickle cell disease with our $15K in a Day Fundraising Challenge. We were thrilled to meet our goal and in total raised $15,600 to support our programming and mission.

June 2024: World Sickle Cell Day and SickleTini Soiree SCDAA joined the Global Alliance of Sickle Cell Disease Organizations (GASCDO) in recognizing the global theme, “Hope Through Progress: Advancing Care Globally.” In recognition of this important day, we hosted a SickleTini Summer Soiree Virtual Happy Hour in June.

July 2024: 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.

September 2024: Sickle Cell Awareness Month Each year, SCDAA joins together with our community to shine a light on sickle cell disease. This year, we were excited to support the inaugural HHS Sickle Cell Disease Summit. Representatives from our national office coalesced with other leaders in the space, and our Vice CMO Dr. Edward Donnell Ivy was a featured presenter.

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N AT I O N A L H I G H L I G H T S Community Partnerships SCDAA worked together with Medscape Oncology to develop “A Rare Day in Community Hematology Clinic,” a free, internet-based activity for hematologists/oncologists, pediatricians, primary care physicians and other health care providers to learn how to better recognize specific characteristics of classic hematological disorders like sickle cell disease and equitably care for these patients.

A FREE, INTERNET-BASED ACTIVITY

A Rare Day in Community Hematology Clinic Interesting Cases in Classical Hematology

CME / ABIM MOC

FACULTY

Morag Griffin, MBChB, FRCPath

Michael Rutledge DeBaun, MD, MPH

Supported by independent educational grants from Agios Pharmaceuticals, Inc.; Novartis Pharmaceuticals Corp.

Developed through a strategic collaboration between

The MedicAlert Pilot Program, which was created by the MedicAlert Foundation with support from SCDAA, continues to help people with sickle cell disease get faster, better emergency care. Now available in all 50 states, the pilot program offers participants a customized smart medical ID card, with easy access to their health information and physicianprescribed pain management plan via a QR code.

SCDAA joined the Institute for Gene Therapies (IGT) Patient Advocacy Advisory Council. IGT advocates for a modernized regulatory and reimbursement framework that encourages the development of transformative gene therapies and promotes patient access. SCDAA is proud to support this mission as an advisory council member.

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.

• We were proud to publish a printable informative brochure which follows “Olivia” on her journey through a clinical trial.

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

sicklecelldisease.org/clinical-trial-finder SCD C.A.R.E.S. Members:

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SCD

C.A.R.E.S. Consortium Collaboration of Advocates for Research, Education and Science

An initiative of the Sickle Cell Disease Association of America

THE PATH TO PROGRESS:

Olivia’s Clinical Trial Journey MEET OLIVIA! She’s heard a lot about how clinical trials can help people with sickle cell disease like her, but she’s not sure where to start. Follow her journey to learn about what it’s like to participate in a clinical trial.

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: Parvovirus B19, Fever and Urgent Care • MARAC Statement: Pfizer’s Voxelotor (Oxbryta®) Withdrawal

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 trained 17 individuals 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, 39 people joined us for P.O.W.E.R ECHO trainings this year.

COMMUNITY HEALTH WORKER TRAINING

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

Sickle Cell Disease Association of America, Inc. 7240 Parkway Drive, Suite 180 • Hanover, Maryland 21076 www.sicklecelldisease.org

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M A R K YO U R C A L E N DA R

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MARK YOUR CALENDAR FOR THE

SICKLE CELL DISEASE ASSOCIATION OF AMERICA , INC. 53RD ANNUAL NATIONAL CONVENTION OCTOBER 15-18, 2025 Embassy Suites by Hilton Charlotte Concord Golf Resort & Spa Concord, North Carolina

NOVO NORDISK FORMABRIDGE SYMPOSIUM: ®

GRANTEE UPDATES THURSDAY, OCTOBER 24 6:00 pm – 7:30 pm

In 2021, the formabridge grant was created to support programs and research initiatives to address unmet needs in transition from pediatric to adult care in sickle cell disease.

JOIN US LIVE AT:

At the 52nd Annual National Convention of the Sickle Cell Disease Association of America, we will hear from the organizations themselves about how the grant impacted their communities, their patients, and the way we think about sickle cell disease.

1065 Peachtree St. NE, Atlanta, GA, US

LOEWS ATLANTA HOTEL

If you have any questions, or for more information, please contact Colin Clayton directly at Colin@triptychhealth.com

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LO N Z I E L E E J O N E S PAT I E N T A D VO CAC Y SYM P O S I U M G E T IN S P I R E D .

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.

LGBTQIA Living with Sickle Cell Disease: What’s Pronouns Got to Do With It? October 26

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M O D E R ATO R : Genice T. Nelson, DNP, APRN, ANP-BC, (she/her) 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.

PA N E L I S TS : André Marcel Harris, MSW, (he/him) is a SCD warrior, advocate and researcher. He is the policy director for the Sickle Cell Association of Houston and holds several positions with stakeholders in the sickle cell and rare disease space. He is a PhD student in social work at the University of Houston and the national sickle cell director for Phi Beta Sigma Fraternity, Inc. Dee J. (he, him, they) has Sickle Cell SS and works in higher education in Connecticut. In his free time, he volunteers at the Hole in the Wall Gang Camp which was founded by Paul Newman for kids with life-threatening illnesses, such as sickle cell, cancer, HIV, progeria and metabolic disorders.

Tristan Lee, (he/him) is a SCD warrior as well as a model, actor and designer of DiVo Stars, a fashion line for SCD. He is a patient advocate for SCDAA and Sick Cells and is passionate about spreading awareness about sickle cell. Named the NORD Rare Disease Day Hero in 2020, he was featured on WebMD in an article about SCD that attracted worldwide attention.

B. Wilson, MEd, (they/them) is a Black, queer-trans artist, equity facilitator and licensed educator. They earned a Bachelor of Science from the University of Minnesota and a Master of Education from St. Thomas University. B is a co-founder of the BIPOC Educators’ Collective, which supports the recruitment and retention of educators of color.

Their work, rooted in equity, centers around justice and community, while examining how race, class, gender, sexuality and dis/ability shape the lived experiences of everyday people.

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HONOR LECTURES

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, Inc., honors them by honoring others, in their name, who have made significant contributions to the sickle cell community.

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CLARICE D. REID, MD, is a

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.

pediatrician with an extensive career in primary care, medical education and research administration. She was educated in the segregated schools of Birmingham, Alabama, and was the third African American to graduate from the University of Cincinnati College of Medicine in 1959. She began her federal career at the Health Services and Mental Health Administration (HSMHA), working with the newly established Sickle Cell Screening and Education Clinics. She was instrumental in unifying the community serviceoriented programs with the clinical and basic research programs at the National Institutes of Health (NIH).

She administered the nation’s sickle cell disease research program for more than 25 years, serving at the NHLBI/NIH as the director of the national sickle cell disease program and as the director of the division of blood diseases and resources.

HONOR LECTURES

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, Inc., 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 professor emeritus 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-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.

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HONOR LECTURES

2024 CHARLES F. WHITTEN, MD, MEMORIAL LECTURE Wally R. Smith, MD Moderator: Wanda Whitten-Shurney, MD

A MEDICAL HOME FOR ADULTS WITH SICKLE CELL DISEASE October 24

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Wally R. Smith, MD, is the Florence Neal Cooper Smith Professor of Sickle Cell Disease at Virginia Commonwealth University (VCU). He also serves as the vice chairman for research of the Division of General Internal Medicine and is the former scientific director of the Center on Health Disparities at VCU. An experienced implementation scientist and an expert in clinical pain and health services research in sickle cell disease, he has authored more than 150 publications and 50 externally funded grants and contracts.

He is the VCU principal investigator for the Sickle Cell Disease Treatment Demonstration Program, the Regional Collaborative for the Northeast Region. The goal of this seven-state project is to improve treatment for adolescents and adults with sickle cell disease. He was also the principal investigator of PiSCES (Pain in Sickle Cell Epidemiology Study), which changed the understanding of SCD pain in adults and led to an National Institutes of Health (NIH) request for proposals on the neurobiology of pain in SCD. He was also the principal investigator for the randomized control trial “Enhancing Use of Hydroxyurea In Sickle Cell Disease Using Patient Navigators,” funded by the National Heart, Lung, and Blood Institute, NIH.

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HONOR LECTURES

GLOBAL PERSPECTIVES ON SICKLE CELL DISEASE Isaac Odame, MD Moderator: Ifeyinwa “Ify” Osunkwo, MD

POINT-OF -CARE TESTING: R E VO L U T I O N I Z I N G S I C K L E C E L L D I S E AS E C A R E I N A F R I CA October 24

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Isaac Odame, MD, is the medical director of the Global Sickle Cell Disease Network, director of the hemoglobinopathy program and hematology section head for the Division of Hematology/Oncology at the SickKids Centre for Global Child Health. He is a professor in the pediatrics and medicine departments at the Temerty Faculty of Medicine at the University of Toronto, and he was the division director and Alexandra Yeo Chair of hematology from 2013-2024. Dr. Odame is also the associate editor of Pediatric Blood & Cancer and serves on the editorial advisory board for The Lancet Child & Adolescent Health.

Dr. Odame’s work is building collaborations between clinicians and scientists worldwide to further research and advance the care of patients with sickle cell disease, particularly those in low- and middle-income countries (LMICs) that shoulder the heaviest disease burden.

He is a leader in the World Coalition on Sickle Cell Disease, a multi-stakeholder, crosssectoral, international public-private partnership that aspires to be the global focal point for efforts to address sickle cell disease in LMICs. Dr. Odame is the principal investigator on implementation studies to integrate early SCD diagnosis and care in primary health care facilities in Sub-Saharan Africa. A member of steering committees, data safety monitoring boards and site principal investigator, he is actively involved in several clinical trials aimed at developing novel disease-modifying and curative therapies for sickle cell disease.

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HONOR LECTURES

2024 KWAKU OHENE-FREMPONG, MD, MEMORIAL SYMPOSIUM Lori E. Crosby, PsyD Moderator: Kim Smith-Whitley, MD

PAT I E N T - FAC I N G G U I D E L I N E S F O R A D U LT S October 25

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Lori E. Crosby, PsyD, is a clinical psychologist, researcher and a professor in the division of behavioral medicine and clinical psychology at Cincinnati Children’s Hospital Medical Center and the department of pediatrics at the University of Cincinnati College of Medicine. She is the director of the Cincinnati Center for Clinical and Translational Science Community Engagement Core and co-director of Innovations in Community Research, and she directs a research program in pediatric sickle cell disease.

Dr. Crosby’s community engagement work with individuals affected by sickle cell disease was featured in the Journal of Prevention and Intervention in the Community. She has been a co-investigator or consultant on more than 19 federally funded grants, including a K07 from NHLBI to develop patient-provider tools to enhance the transition to adult care for young adults with sickle cell disease, and an R21 from the National Institute of Child Health and Human Development to pilot a self-management intervention for adolescents with sickle cell disease. She is currently the principal investigator for a Patient-Centered Outcomes Research Institute study comparing dissemination methods for a hydroxyurea shared decision-making intervention.

Dr. Crosby is an elected fellow of the American Psychological Association (APA) and was awarded the APA Division 54 Diversity Award. She is also a committee member for the National Academies of Sciences, Engineering, and Medicine’s effort titled Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action.

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HONOR LECTURES

2024 CLARICE D. REID, MD, LECTURE Tilicia Mayo-Gamble, PhD Moderator: Lewis Hsu, MD

LIVING WITH TRAIT: W H AT I T M E A N S TO B E A SICKLE CELL CARRIER October 25

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Tilicia Mayo-Gamble, PhD, is the associate dean for practice and research and an associate professor in the Jiann-Ping Hsu College of Public Health at Georgia Southern University. She is a health services and health care disparities researcher with a research agenda focused on implementing community and patient engagement methods to facilitate self-care behaviors and enhance patient-centered care among adults with chronic diseases and marginalized populations.

As a caregiver to her husband with sickle cell disease, Dr. Mayo-Gamble has observed firsthand the lived disease experience and the co-existing experiences of a caregiver. For nearly two decades, she has advocated for and conducted research alongside sickle cell disease and trait stakeholders. This includes working alongside stakeholders to integrate community-based strategies into clinical settings. She has been the co-lead and lead investigator in the Patient-Centered Outcomes Research Institute’s Engagement Awards to engage stakeholders to establish stakeholder networks, prioritize patient-centered outcomes and develop research dissemination strategies. Additionally, Dr. Mayo-Gamble has worked with colleagues to develop frameworks to equitably engage stakeholders in all phases of the research continuum and ensure effective methods can be scaled to other rare chronic conditions.

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A DVO C AC Y U P DAT E NATIONAL SICKLE CELL DISEASE ADVOCACY UPDATE

SICKLE CELL COMMUNITY-BASED ORGANIZATIONS: THE IMPORTANCE OF STATE LEVEL ENGAGEMENT AND PARTNERSHIPS October 24

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MODERATOR: 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. She serves as a federal policy advisor to the Sickle Cell Disease Association of America.

PANELISTS: Tabatha McGee is the executive director of the Sickle Cell Foundation of Georgia. She oversaw the opening of the Sickle Cell Sanctuary Wellness Center — the first and only holistic center in the nation for sickle cell patients — and secured $2.8 milllion in grants to establish the McGee Legacy Studios and produce “Unveiling Sickle Cell — Beyond the Pain,” an educational talk show about sickle cell disease. Her accomplishments include partnerships with health care institutions, organizing camps for children with SCD and advocating for legislative support.

Derek Robertson is the president of the Maryland Sickle Cell Disease Association and has two sons with sickle cell disease. He is a an attorney specializing in the federal 340B Drug Pricing Discount Program and has worked extensively with various institutions on grants management and program income. He is also a member of the National Academies of Sciences, Engineering, and Medicine Forum on Regenerative Medicine.

Ashley Valentine is the co-founder and president of Sick Cells. Her 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.

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Building Connections, Pioneering Therapies.

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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

F E D E R A L PA RT N E R U P DAT E S I S S I C K L E C E L L D I S E AS E A P U B L I C H E A LT H C R I S I S ?

October 24

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Moderator: Crystal Riley, PharmD, MHA, MBA PA N E L I S TS : Mandy David, MPH, PA-C, is a gentic services branch team lead and senior public health analyst for sickle cell disease for the Health Resources and Services Administration.

For 16 years, she was the program manager for The Johns Hopkins University School of Medicine Sickle Cell Center for Adults. She was also the founder, CEO and principal consultant of SickleSmart Consulting, LLC, and has more than 15 years of specialty experience managing sickle cell disease.

Mary Hulihan, DrPH, is a health scientist in the division of blood disorders and public health genomics of the Centers for Disease Control and Prevention (CDC). Her work focuses on projects that apply multidisciplinary public health approaches to improve the lives of people living with sickle cell disease or thalassemia. Serving as the project officer/ technical monitor for numerous CDC-funded cooperative agreements over the past 16 years, she has worked with experts in the fields of epidemiology, data science, clinical medicine, policy and communications to develop innovative methods for improving the health, health outcomes and quality of life for people living with a hemoglobinopathy.

Shondelle Wilson-Frederick, PhD, serves as the chief engagement officer for the National Heart, Lung, and Blood Institute (NHLBI) at the National Institutes of Health (NIH). She works to create an engagement strategy for effectively connecting with multiple partners to advance health equity across heart, lung, blood and sleep research and related public health initiatives. Prior to joining NHLBI, Dr. Wilson-Frederick spent over 10 years at the U.S. Department of Health and Human Services (HHS) as a subject matter expert for sickle cell disease, overseeing strategic engagement activities and leading health disparities and chronic disease initiatives to support the White House and HHS strategic priorities.

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M AS T E R C L ASS W H AT D O E S T H E F U T U R E H O L D F O R S I C K L E C E L L D I S E AS E ?

October 26

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M O D E R ATO R : Lewis Hsu, MD, PhD, is a professor, interim chief of pediatric hematology-oncology and director of pediatric sickle cell at the University of Illinois Chicago. Previously, he led pediatric sickle cell centers at Emory /Children’s Healthcare of Atlanta, St. Christopher’s Hospital for Children in Philadelphia and Children’s National in Washington, DC. His career has been devoted to sickle cell disease for 30 years as a physician-scientistadvocate. He volunteers his service as Chief Medical Officer for the Sickle Cell Disease Association of America (2020-2024) to empower families to overcome the complex problems of SCD. The developments of the past year have left many warriors, caregivers, advocates and health care providers wondering ... What exactly does the future hold for sickle cell disease?

We are gathering momentum in the search for a universal cure, but there is still much more to be done. As the science around this condition rapidly evolves, it is easy to feel overwhelmed by the new options and information available. Join us for this masterclass to discover where we are now and where we are heading with insights from leaders in the sickle cell space. We will discuss recent developments, share new perspectives on treatments and therapies and explore where these innovations will lead us. You will leave feeling confident in your ability to navigate through this new era of sickle cell!

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M OM ENT UM 2024 A WA R D W I N N E R S 2024 Champion’s Awards André Marcel Harris and DeMitrious Wyant André Marcel Harris, MSW, is a SCD warrior, advocate and researcher. He is the policy director for the Sickle Cell Association of Houston and holds several positions with stakeholders in the sickle cell and rare disease space. He is a PhD student studying social work at the University of Houston and the national sickle cell director for Phi Beta Sigma Fraternity, Inc. DeMitrious Wyant, an SCD advocate and warrior as well as a multifaceted artist, is the director of engagement for the Sickle Cell Reproductive Health Education Directive (SC RED). Deeply committed to raising awareness about SCD and men’s health, he presented at the 6th Annual Sickle Cell Community Consortium Symposium (SC3) on Priapism and Men’s Health and was crowned SC3 Prom King. He initiated Save The Male Trunks, educational materials for men experiencing priapism, a complication from sickle cell.

2024 Community Health Worker Award Tiffaney Battle Tiffaney Battle is a community health worker with the Sickle Cell Foundation of Georgia and has advocated for families impacted by sickle cell disease for more than 15 years. She collaborates with various organizations and government agencies to develop and implement programs that address the unique challenges vulnerable and marginalized populations face. A law student and proud mother to three children, Tiffaney is committed to continuous learning and professional development.

2024 Lifetime Achievement Award Clarice Reid, MD Clarice D. Reid, MD, is a pediatrician with an extensive career in primary care, medical education and research administration. She was educated in the segregated schools of Birmingham, Alabama, and was the third African American to graduate from the University of Cincinnati College of Medicine in 1959. She began her federal career at the Health Services and Mental Health Administration, working with the newly established sickle cell screening and education clinics. She was instrumental in unifying the community service-oriented programs with the clinical and basic research programs at the National Institutes of Health (NIH). She administered the nation’s sickle cell disease research program for more than 25 years, serving at the NHLBI/NIH as the director of the national sickle cell disease program and as the director of the division of blood diseases and resources.

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2024 President’s Award Tabatha McGee Tabatha McGee is the executive director of the Sickle Cell Foundation of Georgia. She has overseen the opening of the Sickle Cell Sanctuary Wellness Center — the first and only holistic center in the nation for sickle cell patients — and secured $2.8 milllion in grants to establish the McGee Legacy Studios and produce “Unveiling Sickle Cell — Beyond the Pain,” an educational talk show about sickle cell disease. Her accomplishments include partnerships with health care institutions, organizing camps for children with SCD and advocating for legislative support.

2024 Chairman Award Alexis A. Thompson, MD, MPH Alexis A. Thompson, MD, MPH, is a pediatric hematologist, the chief of the division of hematology and director of the Comprehensive Thalassemia Program at the Children’s Hospital of Chicago, where she serves as the A. Watson and Sarah Armour Endowed Chair for Childhood Cancer and Blood Disorders. She is also an associate director of equity and minority health at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. She has served on national advisory committees for governmental agencies as well as nonprofit organizations focused on improving health care access, increasing workforce diversity and reducing health disparities. In 2018, she served as president of the American Society of Hematology (ASH).

2024 Advocacy Award Ayana Lee Johnson Ayana Lee Johnson is currently a freshman at the University of Alabama. She served as SCDAA’s National Teen Ambassador from 2021 to 2023 making public appearances and assisting with education campaigns. She 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 and the Making the Difference – Sickle Cell Champion Warrior Award and Scholarship. She holds many pageant and competitive dance titles including Miss Virginia’s Outstanding Teen 2022.

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N O D T O “ N A Z ” T R AV E L I N G E X H I B I T

T H E N O D T O “ N A Z ” T R AV E L I N G E X H I B I T A T R I B U T E TO A R T I ST H E R T Z N A Z A I R E Located in the Overlook Room WELCOME RECEPTION Thursday

7:30 to 9 p.m.

EXHIBIT HOURS Friday Saturday

7 a.m. to 5 p.m.

7 a.m. to 2 p.m.

The Sickle Cell Disease Association of America, Inc., will exhibit the artwork of Hertz Nazaire at the convention.

Known for his advocacy work and the “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. He said his childhood in Haiti inspired the colors in his large, vibrant paintings. 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 the University of Bridgeport.

Art exhibit funded by:

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Supported by:

Be sure to visit the exhibit in the Overlook Room at the convention!

S C DA A C O N V E N T I O N STO R E

R A I S E A WA R E N E SS SCD MERCHANDISE Located at Registration STORE HOURS Thursday

7 a.m. to 5 p.m.

Friday

7 a.m. to 5 p.m.

Saturday

7 a.m. to 2 p.m.

Support SCDAA and help spread awareness of sickle cell disease by visiting our store and purchasing a print of Hertz Nazire’s artwork or the one-of-a-kind Pandora Sickle Cell Disease Hope Charm.

Bring Hertz “Naz” Nazaire’s artwork home with you. Prints of the above painting will be on sale at the SCDAA convention store.

SCDAA has again partnered with Pandora to bring back the sickle cell charm designed to raise awareness of sickle cell disease. Availability is limited. Purchase your charm at the SCDAA convention store.

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LOCAL C H A P T E R S ALABAMA • North Alabama Sickle Cell Foundation – Huntsville • SCDAA – Mobile Chapter Inc. • SCDAA – West Alabama Chapter – Northport • Sickle Cell Foundation Central Alabama – Birmingham • 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 • Sickle Cell Association of Hillsborough County • Sickle Cell Disease Association of Broward County • Sickle Cell Disease Association of Florida – Tampa • Sickle Cell Foundation Inc. – Tallahassee • Sickle Cell Foundation of Orange, Osceola and Seminole Counties NEW • Sickle Cell Foundation of Palm Beach County & Treasure Coast • Sickle Cell Medical Advocacy Inc. – Orlando GEORGIA • Sickle Cell Foundation of Georgia Inc. – Atlanta ILLINOIS • Sickle Cell Disease Association of Illinois – Chicago • Sick Cells – Lisle 38

LOC AL 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 NEW • Northeast Louisiana Sickle Cell Anemia Foundation Inc. – Monroe • Sickle Cell Anemia Resource Foundation – Alexandria NEW • Sickle Cell Association of South Louisiana – Baton Rogue NEW • 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 39

LOCAL 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) 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 • Sickle Cell Association of Texas Marc Thomas Foundation – Austin VIRGINIA • Sickle Cell Association Inc. – Norfolk WISCONSIN • Sickle Cell Warriors of Wisconsin – Milwaukee 40

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

Search for trials by keyword,

of America, Inc., Clinical Trial

location, study type and phase —

Finder is a centralized, simple-

all in one place.

to-navigate resource that helps people with sickle cell disease,

sicklecelldisease.org/clinical-trial-finder

their families and caregivers find

Download from the Apple or

clinical trials.

Android app store today!

Your participation helps guide breakthroughs and also gives you access to these new treatments before they are available to the public. You are our heroes!

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M OM ENT UM 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. The 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.

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WAYS T O G I V E SU P P ORT OUR COM MU N I T Y

N O N - C ASH G IFTS

Together, we can make a difference in the lives of those

SCDAA accepts the gift of non-cash assets like

who are affected by sickle cell disease! Your tax-deductible

stock, charitable IRA distribution or cryptocurrency.

donation to SCDAA will assist us in providing critical

To make a stock gift, contact Reginald Hart, Jr., at

support services throughout the country at our chapters and

rphartjr@sicklecelldisease.org or call 410-528-1555.

affiliates. You will help us raise vital funding for research

Gifts from donor-advised funds or individual retirement

that can advance new treatment options and ultimately

accounts and/or cryptocurrency donations can be

find a universal cure. Please consider a gift today.

made by visiting bit.ly/SCDAA_DAF.

WORKPLACE GIVING

LE GAC Y

Support SCDAA through your company’s annual

A planned gift is a contribution that requires planning

corporate giving campaign. It is a convenient way to give

and offers opportunities for you to support SCDAA now

through regular payroll deductions. SCDAA participates

and in the future. Remembering SCDAA in planning for

in the Community Health Charities Federation, the largest

the future gives you the opportunity to leave a legacy in

workplace giving campaign devoted to health. If your

support of our mission. Consider a bequest, charitable

employer participates in Community Health Charities

annuity or other option.

C A M PA I G N S

campaigns, designate your contribution to Sickle Cell Disease Association of America, Inc. SCDAA also participates in the Combined Federal Campaign (CFC), where federal employees can designate SCDAA and donate to the organization. Our CFC ID is 10558.

SCDAA also accepts matching gifts.

D ON AT ION

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

DO N ATE TO DAY

For more information, contact Erika Cartledge at ecartledge@sicklecelldisease.org or call 410-528-1555.

T RIBUT E M E M OR I AL

Make a donation in honor of a loved one. You may 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 43

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BRONZE

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Fulcrum Therapeutics is pleased to support the 52nd 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

There are many barriers to e�ective care for those living with SCD Learn more at fulcrumtx.com

Scan to share your experience caring for those living with Sickle Cell Disease.

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

Realizing the Promise of Gene Therapy The promising work in gene therapy is giving hope to patients and families battling sickle cell disease. Together, we can help ensure our healthcare system is ready for these transformative therapies.

Learn more at gene-therapies.org

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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 (v2.0) | 10/2023

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to give patients and their families more bluebird days.

Setting the standard for gene therapy.

For more than a decade, we’ve forged new paths for gene therapies and are improving and advancing at every step. We have the largest and deepest ex-vivo gene therapy data set in the world - driving the field forward. We engage in conversations that shape our actions and intentions. And we make sure to be good humans who are all in every day.

Please visit www.bluebirdbio.com to learn more. © 2022 bluebird bio, Inc. All Rights Reserved. CORP-US-00186 05/22