The RESPECT PROGRAM

Honoring Legacies of Dr. Paul Swerdlow & Sickle Cell Caregivers A Memorial Program to Support Patients and Student Scholars.

The FSCDR & Phoenicia BioScience and are sponsoring a Student Scholar and My Sickle Cell Health Passport Program and to carry on traditions of Sickle Cell Specialists who touched many lives.

My Sickle Cell Health Passport will be pilot-tested by teen and young adult patients as an aid to help learn about essential care and to facilitate their own care in medical facilities new to them, or where the complexities of sickle cell disease are not well known.

The Program will also fund Summer Scholarships for high school and college students to learn about sickle cell disease, the important roles provided by different medical caregivers, and promote RESPECT for all persons living with sickle cell disease. The Program will provide a stipend for shadowing in Sickle Cell Treatment programs, using the Passport as a guide.

To Support Students Scholars and this Program: Donations can be made to the FSCDR, designated for the RESPECT PROGRAM

Founding Donors:Carolyn & Julie Swerdlow, Yutaka Niihara MD, Susan & Cynthia Perrine, Phoenicia BioScience

To learn more, donate, or apply: [email protected]; [email protected], [email protected]

Paul Swerdlow MD Sickle Cell Specialty Physician & Scientist “Extraordinaire”

Dr. Swerdlow had lifelong dedication to his patients with sickle cell disease.

He obtained his MD from the Harvard-MIT Program in Health Science and was Professor of Medicine & Pediatrics, Hematology Oncology, Wayne State University, and previously Director, Comprehensive Sickle Cell Center, Virginia Commonwealth University. He was on the Medical Staff of Karmanos Cancer Institute, Children’s Hospital of Michigan, and 3 other hospitals.

He directed research, was Investigator on >20 clinical trials, and served on the Advisory Council for Sickle Cell Disease to the NIH/NHLBI, and as Reviewer for NIH & the FDA Office of Orphan Product Development.

He compassionately cared for 3 generations of patients and devoted his clinical teaching of medical students, residents, and Hematology Fellows to improve patients’ lives.

Dr. Wally Smith, a Leader and Authority on pain, credits Dr Swerdlow for requesting his expertise for the VCA Sickle Cell Program and introducing him to the field.

Dr. Swerdlow always referred to his patients as “our women, our men, and our children”

Honoring Legacies of Physicians who Inspired

Collaboration, Discovery, Teaching, & Dedicated Service to Patients Around the World

Samir Ballas MD, Distinguished Physician, Scholar, Advocate, Emeritus Professor of Medicine, Pediatrics, Transfusion Medicine, Thomas Jefferson School of Medicine, Director, Sickle Cell Program, Masterful Advocate of Compassion

Originally from Palestine, Dr. Ballas attended college and American University of Beirut School of Medicine in Lebanon on United Nations scholarships. Devoted to patients living with sickle cell disease from his first lecture, he obtained US Medical Boards in 3 specialties, authored > 700 papers, was a lifelong Advocate & Ambassador for patients, always analyzing and translating medical needs and therapies. His daughter relates his dedication was so constant, “Sickle Cell Disease was …. like a family member. He knew every patient’s life story & wanted every patient to be respected and heard… with compassion.” Dr. Ballas encouraged many hematologists in their career development.

Kwaku Ohene-Frempong MD, KOF, Physician, Professor, Ambassador, Olympian. Tulane and University of Pennsylvania School of Medicine, Children’s Hospital of Philadelphia, directed a leading US Sickle Cell Program

KOF always brought key insights and concerns about sickle cell disease to teaching, comprehensive care, and international medical attention. He served as an Ambassador, bringing current practices back to his home country of Ghana. KOF brought together and fostered research scientists, physicians, caregivers, and trained many Leaders in the field. He was also a historian, Ghanaian traditionalist, and entrepreneur.

Richard Perrine MD, D. Trop. Med, discovered patients living long lives with sickle cell disease and high fetal hemoglobin

After obtaining his MD and D. Trop Med & Hyg. at UCSF School of Medicine & Univ. of Liverpool, he cared for underserved patients in California, Hawaii, Guam, Virginia, and Saudi Arabia as Chief of Internal Medicine for Aramco, where he discovered patients with sickle cell disease & high HbF, living healthy, into older age in an era and region high-risk for deadly infections and early mortality. The HbS gene conferred a survival advantage vs severe malaria. He often spoke fondly about the dignity of his patients when teaching young physicians.

With Oxford Professors Sir David Weatherall, Bill Wood, & Doug Higgs, they discovered genetic changes causing HbH and high HbF, now a basis for therapies. In other efforts, he founded the country’s first Cardiac Care Unit, brought Pnemovax to Middle East patients, and with M. Pembrey produced a Bronze award-winning documentary film on sickle cell disease, distributing it to UK and US medical schools.

My Sickle Cell Health Passport for Patients & Guide for Student Scholars

Learning to live well with SCD requires understanding one’s personal condition, triggers, and practices that are most beneficial for each person
The Passport is a guide for patients to understand and monitor their own health, laboratory tests, signs to urgently seek medical care for, and needed immunizations, medications, and measures that help each unique patient. It will be updated regularly with each patient’s Caregiver Team
The Passport provides a roadmap on measures to reduce complications, recognize potentially serious events, and to minimize long-term effects
Supportive measures, such as music, relaxation techniques, massage, yoga will be recorded for each patient
The Passport can be provided to caregivers at other medical facilities where electronic records may not be the same as the one used by a patient’s primary care team
At the beginning of a Student Scholar shadowing program, an overview session for high school or college students will be given by Sickle Cell Team members or by a FSCDR team member, Susan Perrine MD

Creation of the Student Scholar Program was recommended by Aidan and Isabelle Faller, who as college students, shadowed Drs. Kevin Kuo and Richard Ward at Toronto General Hospital, the largest hemoglobinopathy program in North America.

My Sickle Cell Disease Health Passport Pilot Program Centers

U Mass Chan Memorial Children’s Medical Center,
Emily Vilk NP & Sarah Singer NP, Drs. Nura El-Haj, Stefanie Lowas, & Naheed Usmani

fscdr staff headsshots content factory fort lauderdaleRJJ08330

Foundation for SCD Research
Dr. Lanetta Bronte

Foundation for SCD Research
Dr. Gershwin Blyden

Cloret C, Advisor & Inspiration
Opera singer, medical caregiver & researcher, wife, mother, grandmother, and one of 6 siblings with SCD

Boston Medical Center, Dr. Lillian McMahon, Professor of Medicine (Hematology), Boston University Chobanian & Avidisan School of Medicine

Massachusetts General Hospital, Dr. Sharl Azur, Director, Sickle Cell Program

Advisors: Cloret C, Patient Representative
Dr. Cathy Rosenfield, Associate Professor of Pediatrics, Tufts Univ. School of Medicine
Dr. Philippa Sprinz, Emerita Associate Professor of Pediatrics, Warren Alpert Brown Univ. School of Medicine

To provide feedback on the Passport

Please share your experience with your Provider
or
Click on the links below for Patients or for Caregivers

THE RESPECT PROGRAM