The E.WE Foundation is an IRS approved 501(c)(3) nonprofit healthcare advocacy organization.
To support families affected by Edwards Syndrome, commonly known as Trisomy 18, while changing the medical perspective through efforts of advocacy, education, and public policy.
To ensure all families affected by Edwards Syndrome, Trisomy 18, have equitable access to quality healthcare, early intervention, and social services.
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 Wayne, 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 Fortune 500 Logistics Company and serves as the foundation’s VP of Operations. Sarita, the foundation’s CEO & President, has a professional background in Healthcare Management & Patient Access. Sarita is a global speaker, an award winning advocate, and recognized world’s top patient expert & social health ambassador. Kareem & Sarita are rare disease legislative advocates, members of multiple coalitions, and serve as Community Congress members for the EveryLife Foundation for Rare Diseases providing advice and insight on urgent policy initiatives. Additionally, Sarita serves on executive boards for other nonprofit & community organizations, participates in JEDI (justice, equity, diversity, inclusion) workgroups, and is a member of advisory councils within her home state and across the country. Sarita is certified in Seizure Recognition & First Aid and Mental Health First Aid with continuing education studies in effective parenting & childhood behavior, evidence-based public health practices, and nonprofit leadership. Kareem & Sarita hold Bachelor of Science Degrees in Psychology and Health Science respectively. 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 access to diagnostic therapies and resources can create better health outcomes for chronically ill infants. 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 dedicated to ensuring patient populations have equitable access to quality healthcare, resources, 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 was established to bring awareness to Trisomy 18 while creating a space for families to feel heard and empowered.
*This interview was recorded in February 2020.