We are honored to share our story, research, and advocacy across national and international platforms. From podcasts and documentaries to news articles and policy discussions, these features help amplify the voices of families impacted by Trisomy 18 and other rare diseases.
➡️ Check out some of our features here!
Advocacy Starts at Home: Building Support for Rare Disease Families
Big Huntsville Podcast | Carl Thomas | July 17, 2025
What began as a personal story of grief and advocacy has grown into a mission impacting education, healthcare policy, and family support nationwide. Sarita shares how her family’s journey with her son Elijah, born with Trisomy 18, inspired a nationally recognized nonprofit.
👉 Listen to the full episode
Caregiving in America: Inspired by Bradley Cooper, Centering Voices and Solutions
The Value Brief Podcast | Dr. Richard Chapman, Chief Science Officer | July 10, 2025
Released in tandem with the PBS documentary Caregiving, executive produced by Bradley Cooper, this episode spotlights the urgent and often overlooked challenges facing caregivers in the United States.
👉 Listen to the full episode
Sarita Edwards – Trisomy 18
On One Condition Podcast | Sylvain Berthelot | May 21, 2025
Sarita shares the emotional rollercoaster of receiving her son Elijah’s Trisomy 18 diagnosis at 22 weeks pregnant and how she fought fear with hope, resilience, and love.
👉 Listen to the full episode
Balancing Progress and Privacy in Newborn Screening Practices
Rare Disease Advisor | Manuela Callari, PhD | April 23, 2025
This article explores Sarita’s experience navigating a fragmented newborn screening system and the disparities families often face.
👉 Read the full article
Transforming Hardship into Strong Familial Support
Rare Diseases Podcast | Rare Disease Review Western | September 30, 2024
Sarita discusses building the E.WE Foundation to support families affected by Trisomy 18, sharing the impact of lived experience on advocacy.
👉 Listen to the episode
No Better Time Series with Sarita Edwards
No Better Time Than The Present | Yolanda Brun | April 24, 2024
In this video interview, Sarita talks about the urgent need for advocacy in the rare disease space, especially for Trisomy 18.
👉 Watch the episode
What Is It Like to Live With a Rare Disease?
Atlantic Re: Think | The Atlantic | February 29, 2024
This feature highlights the scale of rare diseases and includes voices like Sarita’s advocating for better access and awareness.
👉 Continue reading
#277 Trisomy 18 with Parent Sarita Edwards
DNA Today | Kira Dineen | February 23, 2024
Sarita discusses her family’s journey and Elijah’s diagnosis in honor of Rare Disease Month.
👉 Tune in here
Connecting Biotech and the Social Determinants of Health
National Press Foundation | Rachel Jones | December 8, 2023
Sarita joins industry leaders to discuss how health equity must drive rare disease innovation.
👉 Read the article | 👉 Watch the recording
WCG’s 2023 Patient Forum
WCG | November 2023
Sarita and Kareem Edwards share their family story and why patient advocacy is vital in clinical research.
👉 Hear their story
Handi-Link on CJAM 99.1 FM
Cam Wells | September 28, 2023
A thoughtful discussion on disability and rare disease featuring the Edwards family.
👉 Check out the episode
2023 #RAREis Global Advocate Grant Recipients
Business Wire | July 27, 2023
The E.WE Foundation was named a grant recipient for its impact on the rare disease community.
👉 Read the press release
Community Impact Grant Spotlight: The E.WE Foundation
Madison Visionary Partners | Melissa Davison | June 8, 2023
This article spotlights the Foundation’s commitment to mental health support for caregivers.
👉 Read the article
Challenges of a General Diagnosis: Parents Persevere
WCG Patient Forum | Steve Smith | March 29, 2023
Sarita reflects on the challenges of receiving a complex diagnosis and advocating for her son.
👉 Watch the interview
Rare Community Profiles: The E.WE Foundation
Patient Worthy | Jessica Lynn | March 29, 2023
A personal look at how the #RAREis Grant supported Sarita’s advocacy and the Foundation’s growth.
👉 Read the article
Elijah Defying All of the Trisomy 18 Odds
Global Genes Stories | Sarita Edwards | March 17, 2023
In honor of Trisomy Awareness Month, Sarita writes about Elijah’s strength and their advocacy.
👉 Read the blog post
EP. 178 – Exhausted and Energized
Once Upon A Gene | Effie Parks | March 16, 2023
Sarita joins fellow advocates for a powerful storytelling session on Rare Disease Week in DC.
👉 Listen to the episode
Kareem and Sarita Edwards, The E.WE Foundation
1 of 20 Podcast | Jonathan Cappiello | December 5, 2022
The Edwards discuss parenting Elijah and the birth of their nonprofit, the E.WE Foundation.
👉 Listen to the episode
Sarita Edwards, Patient Advocate
The Health Design Podcast | Dr. Moyez Jiwa | November 14, 2022
A candid conversation on healthcare, advocacy, and designing systems with patients in mind.
👉 Listen to the episode
BJ Student Advocates on Brother’s Behalf at Global Summit
Madison City Schools | September 19, 2022
Rian Edwards advocates at the Global Genes Summit, inspired by her brother Elijah’s rare disease journey.
👉 Read the article
Solving a Diagnostic Puzzle: Rare Disease Challenges
Tiny Expeditions | Chris Powell & Dr. Sarah Sharman | September 13, 2022
A season finale featuring Sarita and Kareem’s insights into the complexities of rare disease diagnosis.
👉 Listen to the episode
Rare Disease Difference Makers®
Engage Health | Skylar Jackson & Allison Bones | August 22, 2022
Elijah’s milestone kindergarten journey is spotlighted as a beacon of rare disease resilience.
👉 Read the article
Rare Leader: Sarita Edwards
Global Genes | Daniel Levine | August 4, 2022
Sarita is featured as a Rare Leader, discussing her mission and impact in the rare disease space.
👉 Read the article
Postpartum Medicaid Extension: Hope for Mothers
AL.com | Guest Opinion by Whit Sides | May 8, 2022
A heartfelt op-ed reflecting on maternal health policies and the journey of motherhood.
👉 Read the article
Trisomy Awareness Month: Empowering Hope
SOFT UK | Kate Hart | March 31, 2022
An uplifting conversation with Sarita and Kareem celebrating their son and sharing a message of hope.
👉 Watch the live recording
Trisomy Awareness Month Radio Feature
WACE AM 730 RADIO | Joe Ott | March 2022
Sarita joins a radio segment dedicated to raising awareness for Trisomy 18.
👉 Listen to the broadcast here
Presenting the 10th Annual WEGO Health Awards Winners
Grady Stewart | WEGO Health | October 2021
Sarita Edwards announced as a honoree at this year’s WEGO Health Awards. One of over 21,000 nominees, Sarita is celebrated for her leadership and impact across patient advocacy communities.
👉 Read the full article
Madison City Schools Hosts Community Mental Health Fair
WHNT News 19 | Madison Neal | September 13, 2021
The COVID-19 pandemic has intensified mental health challenges for students. The district responded with a Mental Health Matters Fair to address growing needs.
👉 Read the full article
What Does “Care Team” Mean To You?
AllStripes | Taylor Kane | August 18, 2021
Four voices from the rare disease community share what coordinated health care means to them.
👉 Read the full article
Support: ‘There’s No Right or Wrong Way to Go About It’
AllStripes | August 9, 2021
Sarita Edwards’ “Being Rare” podcast was featured in AllStripes’ rare disease content roundup.
👉 Read the full article
🎧 Listen to the podcast episode – Support
Awesome Moms of Huntsville: Sarita Edwards
Rocket City Mom | Stephenie Walker | May 10, 2021
Sarita’s story as a healthcare advocate and mom of a child with Trisomy 18 was featured in this local spotlight.
👉 Read the article
Interview with Sarita Edwards of the E.WE Foundation
Verity’s Village | Beverly Jacobson | March 29, 2021
Sarita shares her family’s journey and the founding of the E.WE Foundation.
🎥 Watch the interview
March is Trisomy Awareness Month
WSFA 12 News | Tonya Terry | March 3, 2021
Tonya Terry interviews Kareem & Sarita Edwards about their journey with Trisomy 18.
🎥 Watch the interview
Christine Matus Speaks With E.WE Foundation Co-Founder Sarita Edwards
Press Advantage | January 4, 2021
An interview discussing family advocacy, Edwards Syndrome, and the foundation’s mission.
👉 Read the full story
Edwards Family Honored with City Coin Presentation
John Few | Madison Record | March 18, 2020
The Edwards family was honored by the Madison City Council for their community impact and recognition as Family of the Year finalists.
👉 Read the full story
Finalists for Madison’s Family of the Year
John Few | Madison Record | January 26, 2020
The Edwards family was among three finalists celebrated for their contributions to the Madison community.
👉 Read the full story
🎥 Watch the recap video
The E.WE Foundation 