The E.WE Foundation is an IRS approved 501(c)(3) nonprofit healthcare advocacy organization.


MISSION

To provide resources and support for families affected by Edwards Syndrome, commonly known as Trisomy 18, and other rare diseases, while changing the medical perspective through efforts of advocacy, education, and public policy

VISION

To ensure all families affected by Edwards Syndrome, Trisomy 18, and other rare diseases, have equitable access to quality healthcare, early intervention, and social services

VALUES

We believe patients with chronic illness like Edwards Syndrome, Trisomy 18, should have immediate access to quality healthcare, medical resources, and economic support, without bias or prejudice.

MEET OUR FOUNDERS

Kareem & Sarita Edwards are parents to Elijah, a vibrant little boy diagnosed in utero with Edwards Syndrome, Full Trisomy 18. They have more than 20 years of professional experience in Business & Healthcare Management. Kareem is a Senior Manager for a Global Transportation and Logistical Information Corporation and serves as the foundation’s VP of Operations. Sarita, serves as the foundation’s CEO & President and has a professional background in Healthcare Operations & Patient Access. Sarita is recognized as a world’s top patient expert and social health ambassador. She is a global speaker and an award winning advocate.

Kareem & Sarita are rare disease legislative advocates, members of multiple coalitions, and serve as Community Congress members providing advice and insight on urgent policy initiatives. Additionally, Sarita serves on executive boards for other nonprofit & community organizations, participates in DEIA workgroups, and is a member of advisory councils within her home state and across the country. Sarita is certified in Seizure Recognition & First Aid by the Epilepsy Foundation and Mental Health First Aid by the National Council for Behavioral Health & Mental Wellbeing. She has continuing education studies in effective parenting & childhood behavior, evidence-based public health practices, and child abuse & neglect prevention.

Kareem & Sarita hold Bachelor of Science Degrees in Psychology and Health Science respectively. Sarita is a candidate for her Masters in Healthcare Administration.

Kareem & Sarita have four other children, Jeffrey, Rian, Josiah, and Jeremiah.

THE “WHY” BEHIND THE E.WE FOUNDATION

The Edwards learned of Elijah’s diagnosis after a routine prenatal ultrasound revealed anomalies. They were referred to Maternal Fetal Medicine who confirmed the Trisomy 18 diagnosis. Trisomy 18 is medically defined as “incompatible with life” which gives leverage to many physicians to withhold medical resources. The poor quality of life stigma further supports the lack of specialty care services available to infants with Trisomy 18. Specifically for the Edwards, they were discharged, post-delivery, with hospice care for the first seven months of Elijah’s life.

The E.WE Foundation believes early diagnoses and access to diagnostic therapies and resources can create better health outcomes for chronically ill infants and children. For the Edwards, many of these therapies were delayed or denied due to the high mortality rate associated with Trisomy 18. Additionally, access to social services and rare disease management was never offered leading the Edwards to independently coordinate Elijah’s care. Today, Elijah’s medical team consists of a local pediatrician and about 17 specialists at Children’s of Alabama which is a 2-hour commute one-way.

The E.WE Foundation is committed to ensuring patient communities have equitable access to quality healthcare, mental health, health & financial literacy, and disease education. We believe patients with chronic illnesses should have immediate access to quality healthcare, medical resources, and economic assistance, without bias or prejudice. The E.WE Foundation is committed to raising awareness about Trisomy 18 and bridging the gap between diagnosis delivery and health care coordination.

(c) The E.WE Foundation | August 2022.