The E.WE Foundation is an IRS approved 501(c)(3) nonprofit healthcare advocacy organization.
To provide resources and support to families affected by Edwards Syndrome or Trisomy 18, and other rare diseases, while changing the medical perspective through advocacy, education, and public policy
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
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 is E.WE’s VP of Operations. Sarita is E.WE’s CEO & President and has a professional background in Healthcare Operations & Patient Access. Sarita is a world’s top patient expert, social health ambassador, global keynote speaker, and award-winning advocate.
Kareem & Sarita are rare disease legislative advocates and members of multiple coalitions. Sarita is a Community Congress member providing advice and insight on urgent policy initiatives. Additionally, Sarita sits on executive boards for other nonprofit & community organizations, participates in DEI 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. Sarita has continuing education studies in effective parenting & childhood behavior, child abuse & neglect prevention, DEI education, and mental health strategy.
Kareem & Sarita hold Bachelor of Science Degrees in Psychology and Health Science. 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 their son Elijah’s rare condition after a routine prenatal ultrasound revealed anomalies. A Maternal Fetal Medicine specialist confirmed the Trisomy 18 diagnosis in utero. Many professionals believe Trisomy 18 is incompatible with life, which gives physicians leverage to withhold medical resources. The poor quality of life stigma further supports the lack of specialty care services available to infants with Trisomy 18. The Edwards were discharged in hospice care post-delivery, where they remained for the first seven months of Elijah’s life.
The E.WE Foundation believes that early diagnoses and access to diagnostic therapies and resources can yield 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. The Edwards had to coordinate Elijah’s healthcare by themselves. Today, Elijah’s medical team consists of a local pediatrician and about 19 specialists at Children’s of Alabama, an almost 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. Follow the Edwards on social media.