Home   Mission   Who   Acronym   Logo   Lexicon   Year   Media  

 
BACK TO SITE MAP
 
What is S.C.A.R.E., Inc.?
S.C.A.R.E.'s Mission
TURNING FEAR INTO ACTIONregistered

 
Statement of the Basic Aims and Objectives of the Sickle Cell Advocates for Research and Empowerment, Inc.
 
Who We Are
S.C.A.R.E., Inc. is an independent not-for-profit community based organization, (run by members of the sickle cell community for the benefit of members of the sickle cell community), dedicated to improving the quality of life of persons with sickle cell disease by developing essential skills of advocacy in said population, toward the ultimate objectives of individual as well as community empowerment.
For more information click here.
 
BACK TO SITE MAP
 
Our Mission
S.C.A.R.E., Inc. was created to:
I. Advocate on behalf of members of the sickle cell community;
II. Sponsor outreach and educational initiatives to facilitate and improve the sickle cell community's understanding and the greater population's awareness of the specific problems and challenges presently confronting the sickle cell community;
III. As a collective voice of the sickle cell community, officially collaborate with medical and/or healthcare professionals, programs or institutions performing clinical research that endeavors to ameliorate the particular conditions of sickle cell disease that are directly relevant to the day to day management of the illness;
IV. Empower persons with sickle cell disease, and their families, in order that we may ultimately have greater control over our own lives and destinies.
 
BACK TO SITE MAP
 
Our Message
We dismiss and summarily reject such terms as "sickle cell victim," "sickle cell sufferer," "sickle cell patient," "sickler," and the like as a means of personal identification. We no longer recognize these terms to be valid because they seek to reduce the entirety of our human existence to that fraction of our lives we spend in hospitals being treated by doctors.
Henceforth, we shall identify ourselves as "Sickle Cell Defiers," as we perceive this term to be far more precise in its description of the totality of our humanity, and that certain state of consciousness basic to any healthy and vital existence.
 
BACK TO SITE MAP
 
Our Work
Advocacy; Strategy planning; Grassroots organizing; Resource development; Collaboration with clinical researchers; Education; Skills building; Publications; Networking; Community building; and Outreach.
 
BACK TO SITE MAP
 
Objectives
For Sickle Cell Defiers:
A. To honestly confront and critically evaluate the manner in which we can often contribute negatively to our own circumstances;
B. To develop a positive program of self-discipline as a means of achieving greater control in our own lives;
C. To thoroughly research the genetic, political and socioeconomic histories of both sickle cell disease and sickle cell defiers worldwide;
D. To thoroughly educate ourselves as to the current state of sickle cell medical research and advances;
E. To shift our current focus from laboratory efforts to find a cure to clinical and alternative treatment methods including, but not limited to, regular doctor visits, acupuncture, psychological counseling, nutrition and exercise, in order to supplement and enhance current modes of acute care;
F. To learn how defiers living in other parts of the country and the world deal with the challenges posed by sickle cell disease, and to develop an interactive network with these communities that will ultimately facilitate an international unification of resources.
 
For Life Partners, Family Members and Friends of Sickle Cell Defiers:
A. To provide a framework within which these individuals can contribute their own unique talents and perspectives to the struggle of sickle cell defiers;
B. To provide family members and carepartners with the tools necessary to enable them to participate more fully and effectively in the management of the health care of their loved ones with sickle cell disease.
 
For Doctors and Healthcare Professionals:
A. To assist doctors, nurses and other medical personnel in achieving a clearer understanding of the most effective ways to care for and to protect the physiological and psychological interests of the sickle cell defier;
B. To participate in, as well as develop and sponsor, teaching initiatives, seminars, conferences and symposiums featuring lectures by defiers and medical specialists, as well as other members of both the sickle cell and healthcare communities, for the purpose of educating the general medical society about the symptomatic realities of this disease, the quality of life of the many sickle cell defiers affected by it, and the viable methods of clinical treatment available to improve that quality of life.
In addition, we will target and directly confront those biases present in the medical community that negatively impact on the lives and well being of the members of the sickle cell community;
C. To develop intelligent, effective strategies and an operative and formidable apparatus to identify and sanction any and all doctors or healthcare professionals who have been proven to mistreat or in any way abuse those sickle cell defiers seeking only that medical care which is entitled them by virtue of both the acute and chronic symptoms of their illness, as well as their most basic human rights.
 
For the Greater Population:
A. To fight the massive discrimination we as sickle cell defiers regularly encounter in societal arenas, such as educational institutions, the job market and the work place, in the following ways:
1. Publishing and distributing educational materials specifically designed to address the legitimate questions and concerns of the teacher or employer of the individual with sickle cell disease;
2. Suggesting alternative programs designed to facilitate and ensure participation of sickle cell defiers in said arenas, e.g., home study programs, flexible work hours, etc.;
3. Implementing a civil rights task force to help guide sickle cell defiers to the proper legal resources necessary to aggressively pursue court action, (such as suits of wrongful termination or class action suits), against schools, universities or employers who discriminate against members of the sickle cell community.
B. To heighten general awareness of the main difficulties confronting sickle cell defiers through a well organized and coordinated media campaign. In so doing, we shall suggest specific ways the population at large may participate in the overall effort to improve the quality of life of sickle cell defiers everywhere.
 
Copyright 1997 S.C.A.R.E., Inc.
 
BACK TO SITE MAP
 
Home   Mission   Who   Acronym   Logo   Lexicon   Year   Media