JAYJ Foundation for Women and Children was founded in 2014 by Valentine Joseph in memory of her three brothers, Jean, Anderson and Yoldy Joseph, who all died from Sickle Cell Anemia Disease and her maternal grandmother, Francilia Esperance, who died from cancer.
JAYJ Foundation is a non profit organization whose mission is to promote, aid, and advocate for better and greater access to health care and healthy living services, education, and overall well-being of women and children in the United States and in Haiti.
JAYJ Foundation organized a Sickle Cell Virtual Symposium on World Sickle Cell Day - June 19th. The panelists included Dr. Ofelia Alvarez, Dr. Thomas Harrington, Dr. Ted Kaplan and Bob Downey along with 3 Sickle Cell Warriors, Shyann Mogene, Chris Joseph and Lex Theodore.
According to the Center for Disease Control and Prevention (CDC), the exact number of people living with Sickle Cell Disease (SCD) in the U.S. is unknown. Working with partners, the CDC supports projects to learn about the number of people living with SCD to better understand how the disease impacts their health. It is estimated that SCD affects approximately 100,000 Americans. SCD occurs among about 1 out of every 365 Black or African-American births. SCD occurs among about 1 out of every 16,300 Hispanic-American births. About 1 in 13 Black or African-American babies is born with sickle cell trait (SCT). .
According to the University of Miami, Miller School of Medicine, “One in 13 children die before their fifth birthday. It is a tragedy and arguably a moral outrage when children die needlessly. Sadly, children with Sickle Cell Anemia are dying needlessly in Haiti, which has a high prevalence of this inherited disease.” The two most effective medications (Penicillin and Hydroxyurea) used to treat Sickle Cell patients are unavailable in Haiti. In Haiti, until now, a sense of fatalism concerning Sickle Cell Anemia has become a self-fulfilling prophecy – children with sickle cell anemia rarely survive infancy. Ironically, they die of an infectious complication of their disease that could be easily prevented – pneumonia.
Palm Beach County is one of the top three counties in Florida with the highest prevalence of Sickle Cell Disease (SCD) patients. Marked disparities in the number of SCD referral centers in comparison to SCD birth hospitals in the county have been reported. The Foundation is aggressively advocating on behalf of Sickle Cell patients and their caregivers to ensure that they receive the best possible care within the health care and school systems; are treated fairly; and that adequate programs and services geared to their specific needs are provided.
For the past three years, our dedicated staff and volunteers have traveled to St. Louis du Sud, Haiti for the Annual JAYJ Foundation’s Back to School/Holiday Mission trips, which were a huge success. We have provided over 600+ meals to schoolchildren, as well as school bags/backpacks and supplies. We also distributed more than 600+ full kits (food, clothes and toiletries) to area residents and toys to toddlers. In 2016, we also organized a mobile clinic where we provided medical services to over 225 plus people including pregnant women, children and the elderly.
While we intend to continue these efforts, the Foundation’s primary focus in the coming years, however, will be on two major priorities: HEALTH ND EDUCATION Issues. As such, the Foundation will launch two initiatives: The Haiti Sickle Cell Disease and Education Initiatives.
Sickle Cell Disease is a genetic blood disorder that causes red blood cells to change shape and can lead to tissue damage and pain, as well as enlarged spleen, anemia, and other symptoms. It is most common among those of African descent. Not long ago, the life expectancy for children diagnosed with the disease was only 15 years. However, significant progress has been made over the years, primarily in the areas of pain management, resulting in fewer hospitalizations, and an increase in longevity using aggressive treatments such as bone-marrow transplants.
With the majority of Haiti's population living on less than $3 a day, it is not surprising that 25%-40% of Haiti’s children under five suffer chronic malnutrition and 59% of them are anemic.
Sickle Cell patients are often subjected to unfair bias and discrimination due to their illness. Hospitals have labeled them as “drug addicts” since the primary treatment for their recurring and painful “crisis” is the administration of powerful narcotics such as morphine, toradol, etc. Schools regularly classify them as “disabled” due to their frequent hospitalizations and extensive absences that can prevent them from completing the required coursework needed to obtain their High School Diploma. These are all myths!
Kimberly Charles, the only daughter of our Founder, Valentine Joseph, also has the full-blown disease. Now, 27 years old, Kimberly continues to fight through and has vowed not let Sickle Cell win or get in her way. She has a Master’s Degree from the prestigious Middlebury College. Let this serve as an example of those Sickle Cell patients who can and do thrive.
This evening of fun, food and inspiration was created by many individuals who planned, decorated, prepared food, and joined to perform to entertain us. While the night was full of highlights, Kimberly's performance of her powerful and poignant Sickle Cell poem was unforgettable and mesmerizing. Kimberly detailed her ordeals as a Sickle Cell patient dealing with frequent Sickle Cell crisis episodes and hospitalizations. There was not a dry-eye in the room after this amazing performance.
Robert Downey, DLM (ASCP) SLS, is the Assistant Director of Clinical Laboratory Applications for Sysmex America, a global leader in clinical laboratory systemization and solutions.
Alexandra Theodore, our 2020 Keynote Speaker, is a Sickle Cell Warrior. Alexandra was born and raised in New York City.