Raising Awareness of Sickle Cell Disease and registering Bone Marrow Donors with K.I.S. Foundation Board member Dondré T. Whitfield; Bone Marrow Ambassador, Nita Thompson; Luther Craddock & Sherman Kelley of the Prince Hall Masons of the Joseph A. Menkins Lodge No. 103; and KiKi Shepard, Executive Director of the K.I.S. Foundation at the 160th Annual Communication Grand Session, July 13-14,2015.
This was a magnificent and historic event! Special thanks to the Grand Master, the Honorable Lovell Morgan for the invitation to attend, register donors, and for the opportunity to address all of your members about Sickle Cell Disease.
H. R. 5124 – “Sickle Cell Disease Research, Surveillance, Prevention, and Treatment Act of 2014”
The SCTRA is a bipartisan legislation introduced to the House of Representatives to renew the nation’s programs for research, surveillance, prevention, and treatment of SCD for another 5 years. Bill H.R. 5124 will expand the national newborn screening program, develop a comprehensive adult transition program, continue public surveillance, expand research efforts and establish up to 25 Sickle Cell Treatment Centers throughout the US all in an effort to support the creation of a sustainable comprehensive model of care for individuals affected by SCD.
This is a huge step for maintained, comprehensive care, but this Bill needs your support. We have 30 Days to sign the White House Petition and make a difference in the lives of patients and families living with Sickle Cell Disease. Help us to reach our goal of 100,000 Signatures by October 22, 2014 to secure the introduction of this Bill in the Senate and get H.R. 5124 passed.
SIGN the Electronic Petition Online (takes 10 seconds of your time)
September is National Sickle Cell Disease Awareness Month and the Founder & Executive Director of The K.I.S. Foundation, Inc. is challenging you to join in the fight and give from your heart by donating to The K.I.S. Foundation, Inc.
Visit our Ways to Give section on the website or simply click on the yellow and brown ribbon to make a difference today!
The Sickle Cell Treatment Reauthorization Act of 2014 introduced in the House of Representatives on July 16, 2014 by Congressman Danny K. Davis (D-IL) and Michael C. Burgess (R-TX). The purpose of this Bill (H.R. 5124) is to amend the Public Health Service Act to reauthorize a Sickle Cell Disease Prevention and Treatment Demonstration Program and to provide for Sickle Cell Disease Research, Surveillance, Prevention, and Treatment.
The priority of the Sickle Cell Treatment Reauthorization, H.R. 5124 is to improve quality of life, treatment, and prevention for those affected by Sickle Cell Disease. Among numerous modified benefits of the Bill includes conducting or supporting research to expand the understanding of the cause of, and to find a cure for, Sickle Cell Disease. It will expand, coordinate, and implement transition services for adolescences with SCD making the transition to adult care. It also aims to establish funding to conduct surveillance and maintain data on the prevalence and distribution of SCD and its associated health outcomes, complications, and treatments; conduct public health initiatives with respect to SCD including education and training for patients, communities, and health care providers; increased efforts to improve access to and receipt of high-quality SCD related healthcare; and to identify and evaluate promising strategies for prevention. The Bill is designed to provide grant funding for up to twenty-five (25) Sickle Cell Treatment Centers throughout the United States for each fiscal year from 2015 through 2020.
The K.I.S. Foundation, Inc. applauds the efforts of Congressman Davis and Congressman Burgess in joining the fight in helping to raising public awareness and calling for change. KiKi Shepard, Founder & Executive Director of The K.I.S. Foundation, Inc. states, “we are happy to educate all our champions of support about the Sickle Cell Treatment Reauthorization Act of 2014. The SCTRA is bipartisan legislation to renew the nation’s programs for research, surveillance, prevention, and treatment of SCD for another five(5) years, is a huge step for maintained, comprehensive care for the Sickle Cell Disease community.”
Representatives Danny K. Davis and Michael C. Burgess development of this Bill was only the first step. It will now need to be introduced to the United States Senate for H.R. 5124 to get passed.