United to Conquer Sickle Cell Disease

SCDC Update, July 2018


 

World Sickle Cell Day, a Success!  

Last month, in honor of World Sickle Cell Day on June 19th, the Sickle Cell Disease Coalition (SCDC) and the American Society of Hematology (ASH) released two videos focused on promoting awareness about sickle cell disease (SCD) and the need for newborn screening in sub-Saharan Africa. The ASH branded video, a 10-minute short film, highlighted the efforts currently underway in Ghana and how parents can ensure that their children with SCD get appropriate care. The SCDC video, a 30 second public service announcement, directed people to a global library, which consists of relevant information for those in Africa seeking resources on SCD. Immediately following the release of these videos, a total of 47 news outlets in Africa incorporated these videos into their daily reporting. Additionally, these videos have generated a lot of discussion on social media, particularly Facebook, generating 46,262 engagements, which includes the number of comments, likes, and shares. Both videos have been viewed over 600,000 times. To watch the documentary or PSA, visit www.scdcoalition.org/global.

ASH Leadership Meets with HHS Leaders 

Earlier this month, the American Society of Hematology (ASH) leadership met with the U.S. Department of Health and Human Services’ Assistant Secretary for Health, ADM Brett P. Giroir, MD, and the U.S. Surgeon General, VADM Jerome M. Adams, MD, MPH, to discuss ASH’s efforts on sickle cell disease (SCD). During the meeting, Dr. Alexis Thompson, ASH President, Dr. Roy Silverstein, ASH President-Elect, Dr. Stephanie Lee, ASH Vice President, and Dr. Susan Shurin, ASH Treasurer, identified areas where ASH and the Assistant Secretary’s office can collaborate on this important multi-faceted initiative to improve the lives of people living with SCD.

Help Teens with Sickle Cell Feel Empowered About Their Health     

The Centers for Disease Control and Prevention (CDC) has released a new two part video series focusing on health care transition among teenagers and young adults living with sickle cell disease (SCD). These videos aim to empower young people with SCD to ‘step up’ and to take ownership of their own health. The videos feature Kevin and Calvanay, two young adults with SCD, who share their thoughts about transition, how it has affected them, and how they have overcome challenges. Watch Kevin’s and Calvanay’s videos. Share these videos with a teenager or a young adult living with SCD to help support his or her transition!

Why Does CDC Monitor Sickle Cell Disease? 

To find the answer to this question, the Centers for Disease Control and Prevention (CDC) invites you to check out a new fact sheet about the Sickle Cell Data Collection (SCDC) program. The SCDC program

gathers health information from multiple sources to determine how many people live with sickle cell disease (SCD) in a particular state.

The fact sheet provides more information about how the SCDC program helps to better understand:

• Where people with SCD live

• Transition from pediatric to adult care

• Hispanic patients with SCD

• Older patients with SCD

• The use of healthcare services

Pfizer’s Council for Change Publishes Report on Improving Vaso-occlusive Crisis (VOC) Management 

The Council for Change (CFC), a group convened by Pfizer Rare Disease, published its first report on Improving Vaso-occlusive Crisis (VOC) Management, which focuses on elevating the care paradigm in the Emergency Department. The CFC is comprised of over twenty leading experts, advocates, and patients in the United States and was formed to help to drive forward advances to improve management and acute care of sickle cell disease. 


Upcoming SCD Events


Sickle Cell Patient and Family Educational Symposium

The 5th Annual Sickle Cell Patient and Family Educational Symposium will be taking place August 1-5, 2018, in Memphis, TN. The Annual Sickle Cell Disease Patient & Family Educational Symposium is the only national sickle cell convention designed, created and hosted by the sickle cell patient and family community. Each year the meeting is hosted by a partnership of sickle cell community-based organizations, patients and advisors. This year’s convention is hosted by The Sickle Cell Foundation of Tennessee and the Sickle Cell Champions Association (SCCA), in partnership with Hope for SCD and the International Association of Sickle Cell Nurses and Professional Associates (IASCNAPA). The convention will focus on mental health, with tracks designed specifically for teens and young adults, children and caregivers, and men. The agenda is designed by the sickle cell community with topics identified by patients, caregivers and healthcare supporters, ranging from “Parenting Issues from Birth to Adult” and “The Science of Sickle Cell” to “Sickle Cell Mental Health” and “Sickle Cell and College Life”. For more information, and to register, visit https://sicklecellconvention.com

Join SCDAA for its 5th Annual Walk with the Stars & Move-a-thon

The Sickle Cell Disease Association of America (SCDAA) is hosting its 5th Annual Walk With the Stars & Move-a-thon on August 18, 2018, at the scenic Canton Waterfront Park in Baltimore, MD. Walk With The Stars & Move-a-thon is one of SCDAA’s largest events dedicated to finding better treatments and a universal cure for sickle cell disease (SCD). This event is the only 5K benefiting SCD on a national level, creating more opportunities of impact for SCDAA’s 42 chapters across the United States. To date, SCDAA has raised over $540,000 from this event for better treatments and improvements in the quality of health for individuals, families and communities affected by SCD. Those who participate in this event will not only be walking and running, but jump roping, hoola hooping, and dancing to Zumba. For more information about corporate sponsorship opportunities and to register for the Walk, visit http://www.sicklecellnationalwalk.org.

Sickle Cell Disease Therapeutics Conference 

Global Blood Therapeutics (GBT) will host the 7th Annual Sickle Cell Disease Therapeutics Conference (SCDTC) at the Park Central Hotel in New York City on September 13, 2018.  This annual meeting brings together healthcare professionals, patients, community-based organizations and advocates, investors, policy makers and industry representatives to discuss topics important to the community along with the latest advancements and trends in treating sickle cell.  The conference is open to anyone with an interest in sickle cell. This year’s panelists include: W. Keith Hoots (National Heart, Lung, and Blood Institute (NHLBI)), Beverley Francis-Gibson (Sickle Cell Disease Association of America), Dominique Goodson (Sickle Cell Disease Community Forum), Dr. John J. Strouse (Duke University Medical Center) and Dr. Rosalyn Stewart (Johns Hopkins University School of Medicine) to name a few. For those who cannot attend in person, Sickle Cell Warriors has again exclusively partnered with GBT to livestream the conference via Facebook Live. It will be available to view here: www.facebook.com/SickleCellWarriors/.  For more information, please visit the official SCDTC website.  

The SCDAA 46th Annual National Convention 

The Sickle Cell Disease Association of America (SCDAA)’s 46th Annual National Convention will take place October 13-18, 2018 in Baltimore, MD. This year’s theme is Celebrating Diversity Within the Sickle Cell Community: Commitment, Innovation, Practice. The SCDAA Annual National Convention is a four-day conference designed to address the multi-factorial aspects of sickle cell disease (SCD). The conference fosters the exchange of the latest scientific and clinical information related to the disease which is achieved through the offering of innovative symposia, training seminars, and interactive panel discussions. In addition, this year’s convention offers an array of exciting activities designed to educate and motivate the entire community to get involved in the fight against SCD. The convention is aimed at individuals living with SCD and sickle cell trait, their family members, physicians, researchers, nurses, social workers, psychologists, and community health workers. Click here to find out more, and to register.  

Additional details will be forthcoming. If you have any questions please send them to Rusinel.amarante@nih.gov or Jessica.peterson2@nih.gov

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