Page 22 - The Scepter - Spring_Summer 2017 - Syn-Lod 2017 SPECIAL EDITION_Neat

SCDAA’s 45th ANNUAL CONVENTION RECAP
Lady Teresa Norton, TLOD National Sickle Cell Chair

SHOUT OUT TO Top Ladies of Distinction, Inc. (TLOD): The Sickle Cell Disease Association of Ameri-
ca held its 45th Annual Convention from Oct 25 - 28, 2017, at the Sheraton in Atlanta, GA. Among the over 689
registrants, three dedicated Top Ladies eagerly absorbed the information and were delighted to representative us
at this completely SOLD OUT event. Ladies Kimberly Willis Green, Chapter President, and Kala Walton, Chap-
ter First Vice President for the Atlanta Peachtree Chapter in Area IV, accepted a Community Service Apprecia-
tion Award on behalf of TLOD National and Lady Tracy Reed of the Confluence Chapter, and Area III SCDA
Chair attended as a patient. TLOD was presented with an appreciation plaque because we are the only non-
pharmaceutical company that advocates and donates consistently and sponsors the Annual Convention. Over
the last two years, we’ve contributed nearly 15,000 volunteer hours towards SCDA Advocacy, and donated and
directly contributed over $35,000 to help find a cure.

BREAKING NEWS: Treatment: Sickle Cell patients have waited nearly twenty years to have access to another
drug besides Hydroxyurea. The FDA has finally approved a new drug for Sickle Cell treatment. The drug, En-
dari, has been approved to reduce severe complications associated with Sickle Cell. Patients treated with Endari
experienced fewer hospitalizations, fewer days in the hospital, and fewer occurrences of acute chest syndrome.
Legislation: The Sickle Cell Disease Research, Surveillance, Prevention, and Treatment Act of 2017 is a bill that
amends the Public Health Service Act to authorize the Department of Health and Human Services to make
grants to states to: (1) collect data on the prevalence and distribution of sickle cell disease, (2) conduct sickle cell
disease public health initiatives to improve access to care and health outcomes, and (3) identify and evaluate strat-
egies for prevention and treatment of sickle cell disease complications.

RESEARCH: JUST IN CASE YOU MISSED IT: Survey: The results are in. On Sep 21, 2017, Howard
University, Pfizer, and the National Newspaper Publishers Association (NNPA) released a report that summa-
rized how their survey of 800 respondents revealed that African Americans are still unaware of Sickle Cell Dis-
ease’s prevalence in their own communities. Most of the respondents were familiar with sickle cell and had gen-
eral knowledge of the disease, but only a third were aware that it disproportionately affects people of African de-
scent. Translation: We need to educate the public, beginning yesterday.

Although a huge majority of the respondents seemed receptive to clinical research, nearly half of all studies have
been cancelled due to nonparticipation. To read the entire article, go to https://www.afro.com/new-poll-
highlights-ignorance-sickle-cell-disease.Grant: In October, the FDA awarded six grants totaling over 6 million
dollars to study rare diseases and how they progress over time. Among the 80 applicants, with over 60 rare dis-
eases, Dr. Kenneth Ataga, a researcher at The University of North Carolina at Chapel Hill, has received a $2 mil-
lion grant over 5 years to support his study of chronic kidney disease cellular function in sickle cell patients. For
more information see https://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm579375.htm.

Ladies Kimberly Willis Green (Atlanta Peachtree Chapter Presi-
dent), Sonja Banks, (SCDAA CEO) and Kala Walton
(Atlanta Peachtree Chapter 1st Vice President) attend SCDAA
45th National Convention in Atlanta

Lady Tracy Reed, (Confluence Chapter, Area III SCDA
Chair and SCD patient) attends the SCDAA Convention.