IS A DAY OF COMMUNITY ACTION ON WORLD SICKLE CELL DAY, JUNE 19 , WHEN INDIVIDUALS AND ORGANIZATIONS ACROSS THE REGION, COUNTRY, AND WORLD ENGAGE IN AWARENESS ACTIVITIES THAT BRING ATTENTION TO THE NEED FOR IMPROVED CARE, INCREASED FUNDING, AND PUBLIC SUPPORT FOR SICKLE CELL DISEASE AND TRAIT.
The Shine the Light on Sickle Cell Campaign is a day of community action to raise awareness about sickle cell disease on June 19, which has been designated by the United Nations as World Sickle Cell Awareness Day to acknowledge sickle cell disease as a global public health concern. We’re thrilled to recognize your participation in Shine the Light! The buildings and structures illuminated in red throughout the city on June 19 were an exciting, highly visible, inspiring acknowledgement of the importance of sickle cell awareness.
We have created this photo book of the sites that have been lit in red over the past two years as a gift to show our sincere appreciation to the organizations in Philadelphia who have embraced the purpose of Shine the Light on Sickle Cell. From the continuous lights along Boathouse Row to the dotted lights across the Ben Franklin Bridge and the skyhigh lights atop the Pyramid Club, we salute you all for your commitment to the sickle cell community.
Dr. Rosalyn Stewart
Co-Principal Investigator
SiNERGe
Johns Hopkins Medicine
Dr. Sophie Lanzkron
Co-Principal Investigator
SiNERGe
Johns Hopkins Medicine
Your participation means so much to the “sickle cell warriors” and families, and the dedicated providers who serve them, here in Philadelphia and around the country and world. With over 20 structures lit in red during 2021 and 2022, you are leading the way in raising much-needed awareness about sickle cell disease.
We are proud to partner with you to continue to shine the light on sickle cell! Please accept our sincere appreciation.
Dr. Karen L. Proudford
Lead CBO SiNERGe CBO
Wm E Proudford Sickle Cell Fund
Rev. Zemoria Brandon
Chair, Shine the Light Planning Committee
SiNERGe CBO
SCDAA Philadelphia/Delaware Valley Chapter
“ The greatness of a community is most accurately measured by the compassionate action of its members.”
– Coretta Scott King
7Benjamin Franklin Bridge
Eyewitness News
DoubleTree Hotel by Hilton Center City Philadelphia
FMC Tower at Cira Centre South 2929 Walnut Street
19
Pavilion at the Hospital of the University of Pennsylvania 1 Convention Center
06
1650 Arch Building, 1650 Arch Street (2021)
07 Benjamin Franklin Bridge (2021)
08 Boathouse Row (2021*)
09
CBS-3 Eyewitness News, 1555 Hamilton Street (2022)
10 Cira Centre, 2929 Walnut Street (2021*)
11 Citizens Bank Park, 1 Citizens Bank Way (2022)
12
13
DoubleTree Hotel by Hilton Center City Philadelphia, 237 South Broad Street (2021)
FMC Tower at Cira Centre South, 2929 Walnut Street (2021*)
14 Franklin Square Fountain, 200 North 6th Street (2021*)
15 Kimmel Center, 300 South Broad Street (2021*)
16 Liberty Place, One and Two, 1650 Market Street (2021*)
17 Lincoln Financial Field, 1 Lincoln Financial Field Way (2021*)
18
Lits Building, 701 Market Street (2021*)
19 Pavilion at the Hospital of the University of Pennsylvania, 1 Convention Center (2022)
20 Philadelphia College of Osteopathic Medicine, 4170 City Avenue (2021*)
21 Pyramid Club, 1735 Market Street (2022)
22
Symphony House Condominium, 440 South Broad Street (2021*)
23 Three Parkway Building, 1601 Cherry Street (2021)
24 Wells Fargo Center, 3601 South Broad Street (2021*)
Year the photo was taken is in parentheses. An asterisk indicates building was also lit in 2022.
Photos by Imagic Digital
PHOTO INDEXIn the United States, sickle cell disease affects predominantly African-Americans, though anyone of African descent may be affected. Sickle cell disease is an inherited disease and is not contagious. The hallmark of sickle cell disease is debilitating and excruciating pain episodes, called “crises,” which can appear rapidly and unexpectedly, often leading to emergency room visits and hospitalization. Crisis pain is highly variable, but has been described as the feeling of being hit repeatedly by a baseball bat or of having nails driven into joints and bones. SCD can cause damage to vital organs, which can lead to a lower life expectancy for those unable to undergo bone marrow transplant procedures. More research is needed to develop effective treatments and a universal cure for sickle cell disease. For more information about sickle cell disease, visit the National Heart, Lung, and Blood Institute’s website at:
Sickle cell disease (SCD) refers to a group of inherited red blood cell disorders. It is the most common genetic blood disease in the United States, with an estimated 100,000 Americans living with the disease.
SiNERGe is the Sickle cell improvement across the NorthEast ReGion through education (SiNERGe) Project, an initiative funded by the Health Resources and Services Administration (HRSA). The SiNERGe Project is managed by Principal Investigators at Johns Hopkins, who work with Site Principal Investigators in 13 states, the District of Columbia, the U.S. Virgin Islands, and Puerto Rico to improve access to highquality care for sickle cell patients. Information about the SiNERGe Project can be found at:
Citizens for Quality Sickle Cell Care
Delaware
Sickle Cell Association of Delaware District of Columbia
Faces of Our Children
Sickle Cell Association of the National Capital Area Inc.
Armstead-Barnhill Foundation for Sickle Cell Anemia
Sickle Cell Association of Harford and Cecil Counties and the Eastern Shore
Christopher Gipson Sickle Cell Moyamoya Foundation
Maryland Sickle Cell Disease Association
William E. Proudford Sickle Cell Fund Inc.
Massachusetts
Greater Boston Sickle Cell Disease Association
New Jersey
The SiNERGe community-based organizations (CBOs) are over 20 patient advocacy organizations throughout the Northeast region that work in partnership with providers to support overall SiNERGe project goals. The vision of the CBOs is “longer, healthier lives for individuals with sickle cell disease,” and their mission is to gather momentum in the fight against sickle cell disease by fostering connections among communitybased organizations in the Northeast region. The William E. Proudford Sickle Cell Fund is the Lead CBO for the SiNERGe CBOs. Information about the SiNERGe CBOs can be found at:
Sickle Cell Association of New Jersey
New York
Candice’s Sickle Cell Fund
New York Sickle Cell Advocacy Network
Sickle Cell Advocates of Rochester
Sickle Cell Awareness Foundation Corp International Sickle Cell Thalassemia Patients Network
Westchester Sickle Cell Advocacy Network
Children’s Sickle Cell Foundation Inc.
Sickle Cell Disease Association of America – Philadelphia/Delaware Valley Chapter
South Central Pennsylvania Sickle Cell Council
Anemia Falciforme Sickle Cell Disease en Puerto Rico
Life and Family Foundation
Sickle Cell Association Inc.
Zemoria Brandon
Chair,Shine the Light on Sickle Cell Planning Committee
Administrator/Social Worker, Sickle Cell Disease Association of America, Philadelphia/Delaware Valley Chapter
Judy Anderson
Chair, STL Public Relations Subcommittee
Executive Director, Sickle Cell Association, Norfolk, Virginia
Public Relations Subcommittee Members – Regina Hartfield (SCDAA HQ), Betty Johnson (MD), Mary Bentley LaMar (NJ), Stanley Simpkins (PA)
Barbara Harrison
Chair, STL Outreach Subcommittee
Director at Large, Sickle Cell Association of the National Capital Area, Inc.
Outreach Subcommittee Members – Esme Hilman (NY), Mark Goodwin (NY), Sabrina Lewis (NY), Artisha McCoy (NY), Vivian Okowuagwe (NY), Darlene Young (NJ)
Murine Lusakweno Chandler
Chair, STL Social Media Subcommittee
Director of Programs, Sickle Cell Disease Association of America, Philadelphia/Delaware Valley Chapter
Social Media Subcommittee Members – Deyaniris Espinal (PA), Lya Jackson (NJ), Kieyeitha Ward (NJ)
The Shine the Light Planning Committee expresses its appreciation to:
Mary Bentley LaMar, Sickle Cell Association of New Jersey Bailey House, Johns Hopkins Medicine
Steven Rivelis, Rivelis & Associates
Shelley Drasal, Your Faithful Assistant Karen Byer, BritePen Services
The SCDAA – Philadelphia/Delaware Valley Chapter expresses its sincere appreciation to:
Carolyn DeLisi
Thomas Flach Tom Forkin
Joanne Ghanayem Cory Gunselman Cathy Henry Nicole Johnston Kevin Kennedy Emily Knitter Mark Merlini Georgieann Michels Orla Moloney
Leslie Patterson-Tyler Theresa Perrey Aviva Sarkos
Howard Sok Kaitlin Szaraz Lauren Testa John Wilson
The SiNERGe Project is a Health Resources and Services Administration (HRSA)-funded multi-state collaborative of providers and community-based organizations (CBOs) dedicated to improving care for individuals with sickle cell disease.