United to Conquer Sickle Cell Disease

SCDC Update, January 2017


Dr. Trevor K. Thompson

The Sickle Cell community mourns the loss of Dr. Trevor K Thompson, Chief Executive Officer of the Sickle Cell Foundation of Tennessee. He was a phenomenal man and a powerful champion for those living with sickle cell disease. His sudden loss has been devastating. He exemplified living Sickle Strong and his strength, dedication and fierce determination will continue to be a source of inspiration.

Dr. Thompson's advocacy and leadership was a cornerstone in many aspects of sickle cell advancement, both within and outside his organization. He influenced both education and advocacy as well as emergency department protocols and research. For more information please click here.

Recap of SCD Activities at ASH Annual Meeting

The world’s most comprehensive hematology event of the year, the 58th American Society of Hematology Annual Meeting and Exposition was held in San Diego, California last month. There were numerous educational and scientific programs that drew in a record setting number of attendees. This meeting in particular included a number of sessions related to sickle cell disease, including the Presidential Symposium “Sickle Cell Disease: New Biology, New Therapeutics.” These series of talks spotlighted the exciting gene-modifying therapies that have the potential of changing not only the course of this disease, but also other genetic diseases. Visit the abstracts, daily highlights from the meeting, and news for more information on SCD from the ASH Annual Meeting.

National Blood Donor Month

January is National Blood Donor Month and during this month we recognize the lifesaving contribution of blood donors across the nation, especially for individuals with sickle cell disease. Public health awareness of blood donation has been observed in January since 1970. One of the most difficult times of year to collect enough blood products to meet patient needs is during the winter, thus the goal of this public health awareness month is to increase blood donations. As we all know individuals with sickle cell disease often require frequent blood transfusions throughout their lives and donation of blood is critical.

In support of National Blood Donor Month we encourage all to raise awareness using the following Tweet: Your #blooddonation can help individuals with sickle cell disease to #ConquerSCD. Learn more at www.scdcoalition.org.

Deadline Extended to Feb. 9 for HRSA's SCD Treatment Demonstration Program Grant

The Health Resources & Services Administration just extended the deadline for the Agency’s Sickle Cell Treatment Demonstration Regional Collaboratives Program grant (HRSA- 17-078) to February 9, 2017. The purpose of this funding opportunity is to support Regional Coordinating Centers that will establish regional networks and provide leadership and support for regional and statewide activities that develop and establish systemic mechanisms to improve the prevention and treatment of Sickle Cell Disease. Click here for frequently asked questions (FAQ). HRSA is also planning a technical assistance webinar regarding the grant opportunity on January 23, 2017 at 3:00 PM EST. To access the webinar go to https://hrsa.connectsolutions.com/scdtdp/; the call-in number is 877-918-2508; and passcode is 3430898.

Webinar - Creating a New SCD Clinic: A Case Study

The California Rare Disease Surveillance Program invites you to attend a webinar, "Creating a New SCD Clinic: A Case Study," to find out how a few dedicated professionals created a new county clinic in South Los Angeles, uniquely qualified to serve the population that needed its services the most. Doctors, public health and patient advocates will describe what it takes to create and maintain a new SCD clinic on Wednesday, January 25, 2017, from 10-11 a.m. PST (1-2 p.m. EST). Click here to register.

2017 Leadership Summit & General Assembly of CBOs and Advocates

The 2017 Sickle Cell Community Consortium Leadership Summit and General Assembly of CBOs and Advocates will be held March 16-19, 2017 in Atlanta, Georgia. The General Assembly is the decision-making body of the Consortium and is made up of credentialed CBOs, sponsored patient groups, patient and caregiver advocates, community partners and medical/research advisers. This group meets annually to apply the framework of Collective Impact to define and prioritize the top needs, gaps and problems within the sickle cell community. They then collectively develop and execute patient-powered solutions to these community-identified concerns. For more information contact Dr. Lakiea Bailey, Director@sicklecellconsortium.org.

National Calendar of Events

SCD community volunteers have created a national calendar of sickle cell events for 2017. The calendar is currently being updated to include additional events by state. If you are interested in submitting an event please submit the following details to events@sicklecellconsortium.org:

  • Event type
  • Date
  • Sponsoring organization(s)
  • Contact information including email and phone number

Save the Dates

SCDAA - Sickle Cell Disease Community Health Worker Certification Training
The Sickle Cell Disease Association of America, Inc. will be hosting its second Sickle Cell Disease Community Health Worker Certification Program, beginning January 30, 2017. The seven week training will be held via webinar, Mondays and Wednesdays from 12PM-5PM EST. In addition to the online coursework, trainees must complete 80 hours of fieldwork (40 hours in a medical institution and 40 hours in a community organization. They must also pass a final exam. The training costs $800, plus the cost of the textbook. The application can be downloaded here. For any additional questions, please contact Lauren Whiteman at lwhiteman@sicklecelldisease.org or 410-528-1555.

3rd Global Congress on Sickle Cell Disease
The Global Sickle Cell Disease Network (GSCDN) is bringing together leading sickle cell disease researchers and clinicians from high, middle and low income countries at its 3rd Global Congress on Sickle Cell Disease. This event will be held from February 21-24, 2017, in Bhubaneswar, Odisha, India. The Global Congress is held every two years and offers opportunities for the united engagement of SCD professionals and stakeholders and a multidisciplinary approach to improve health outcomes for people with sickle cell disease through the delivery of innovative solutions resulting from the highest quality of research and clinical care. To learn more click here.

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The SCDC Update, the coalition newsletter, will be issued at least six times per year with the aim of bolstering collaboration and information-sharing SCDC members and the SCD community at-large.