The International Association of Sickle Cell Nurses and Professional Associates
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Mission Statement
Mission Statement: IASCNAPA provides a platform for nurses, nurse practitioners, physician assistants, social workers, sickle cell advocates, and other healthcare professionals caring for individuals with sickle cell disease to improve the care of people with sickle cell disease through advocacy, standardized practice, and education.
About This Cause
INTERNATIONAL ASSOCIATION OF SICKLE CELL NURSES AND PROFESSIONAL ASSOCIATES (IASCNAPA) Providing Care and Advocating for Individuals with Sickle Cell Disease!!! Sickle Cell Disease (SCD) is an inherited, complex and lifelong medical condition that affects approximately 100,000 people in America and approximately 4381 individuals in North Carolina. SCD is characterized by red blood cells that become hard, rigid and sickle-shaped, which cause the red blood cells to stick together and block the flow of oxygen to the body. This leads to intense pain and other serious conditions such as infections, anemia, tissue damage, stroke, organ failure, and even death. In the United States, most people with SCD are African Americans. There are also many people with this disease who come from Hispanic, Southern European, Middle Eastern, or Asian Indian backgrounds. People who have SCD often suffer many complications that can make life extremely challenging. The most common complication is pain. Acute and chronic pain episodes often occur many times throughout the year. Pain and other illnesses can lead to frequent emergency department visits, long hospital stays, and unplanned illnesses that can disrupt the individual’s life, often limiting their education, careers, and quality of life. There have been several important discoveries that have led to improved diagnosis and treatments over the last century. However, there is still no cure for sickle cell disease. Advances in treatment have been limited compared with other diseases such as cystic fibrosis or where multiple treatments have benefited this patient population. Many people who have SCD do not have access to treatments that could improve the quality of their lives. This makes SCD a disparate health condition. The health outcomes and related treatment disparities of SCD also make it a public health priority in the United States and throughout the world. The International Association of Sickle Cell Nurses and Professional Associates (IASCNAPA) is a non-profit, tax exempt organization (EIN 62-1523624) of nurses and other professional associates who volunteer their time to maintain high standards in the provision of quality and accessible health care and support for individuals with SCD. IASCNAPA members are volunteers comprised of multiple professionals who make significant contributions that add to the depth and breadth of knowledge about SCD. Our cooperative efforts allow us to play vital roles in clinical research, education, care management, and quality of life. In as much as there is no cure for SCD, we emphasize the importance of self-care management and self-advocacy. Additionally, we provide scholarship support to students with SCD. IASCNAPA members raise awareness about SCD in community and health care settings and provide support in the form of scholarships to students with SCD to help encourage continued growth and education. Finally, we remember those who have lost their lives to SCD. __________________________________________________________________________________ Please see our IASCNAPA website below as well as a list of recent events and accomplishments: IASCNAPA Website: http://iascnapa.org/default.shtml Some of our recent events and accomplishments are also below: • Provided multiple $500 scholarships to students with sickle cell disease in 2016 and 2017 • Expert Panel Endorsement for the Evidence-Based Management of Sickle Cell Disease (SCD) released by the National Institutes of Health • Hosted Nursing Symposium the 43nd Annual Convention of the Sickle Cell Disease Association of America (SCDAA) in Baltimore, MD in September 2016 and in Atlanta Georgia in 2017. • Hosted patient/caregiver/healthcare provider session at the 3rd Annual Sickle Cell Consortium conference in Los Angeles, CA in July 2016 • Oral Plenary presentation at the 11th Annual Foundation for Sickle Cell Disease Research meeting providing results from patient/caregiver/healthcare provider session in July • Participated in Sickle Cell Disease National “Day on the Hill” event in Washington, DC • Participated in the 2017 Sickle Cell Community Consortium Leadership Summit in Atlanta, GA in March 2017 Sponsorship letters are available upon request. ____________________________________ Scholarship Program The International Association of Sickle Cell Nurses and Professional Associates, Inc. has established a college scholarship program to assist individuals living with Sickle Cell Disease who will be attending an institution of higher learning in the United States. Applicants for IASCNAPA's $1,000 Scholarships must be enrolled in, or have been accepted by a recognized and accredited post- secondary school, including college, university, trade school, or other institution of higher learning. Curriculum choice, age, gender, race, ethnic background, religion and political affiliation will not be used in evaluating applications. An active IASCNAPA member or a sickle cell disease medical provider must sponsor all applicants. Applications are accepted from March 1 through July 1 of each year. Awards will be given in August of each year. The number of scholarships awarded each year is dependent on available funds and the quality of applications. IASCNAPA’s funded scholarship awards include: The Steven Christy Scholarship Fund is dedicated by his wife in memory of her husband, an individual who lived with sickle cell disease and valued education. He struggled to complete college, but persevered and graduated from Fitchburg State University. He spent his career helping others - first as a social worker at Favarh and then as a counselor and coordinator of newborn hemoglobinopathy screening programs at the combined UCONN/St. Francis sickle cell clinic. The Christine A. Johnson Scholarship Fund is provided by the friends of Dr. Christine A. Johnson in her honor. Dr. Christine A Johnson was a provider and advocate for people with sickle cell disease for most of her adult career. She was the founder and Director of the Pediatric Sickle Cell Program at Wake Forest Baptist Medical Center, and an advocate for sickle cell disease for 30 years. Download the scholarship application form.