What Is It Like to Live With a Rare Disease?
Atlantic Re: Think | The Atlantic | February 29, 2024
THE TERM RARE DISEASE IS, IN A SENSE, A MISNOMER. If all of the people with rare diseases worldwide inhabited their own country, it would be the third-largest by population, after China and India. Thirty million Americans alone—as many as suffer from Type 2 diabetes—have been diagnosed with rare diseases. “Rare diseases may individually be rare,” the National Institutes of Health (NIH) observes, “but are collectively common.” It’s for this reason the United Nations cited them in 2021 as an emerging global public-health and human-rights priority. Continue Reading
#277 Trisomy 18 with Parent Sarita Edwards
Kira Dineen | DNA Today | February 23, 2024
To continue our rare disease month celebrations, in this episode we chat with Sarita Edwards who’s son Elijah has Trisomy 18. Tune in here.
Connecting Biotech and the Social Determinants of Health
Rachel Jones | National Press Foundation | December 8, 2023
Equity and Access Should Influence Rare Disease Innovation
Sika Dunyoh of Travere Therapeutics and Sarita Edwards of The E.We Foundation say rare disease equity must be prioritized in communities and in biotech conference rooms. Program Date: Nov. 15, 2023 Read the article! Watch the recording!
WCG’s 2023 Patient Forum
WCG | November 2023
WCG’s 2023 Patient Forum brought advocacy to the forefront of clinical research, offering a space for experts, patient advocates, and healthcare professionals to collaborate, discuss, and find patient-centric solutions for clinical trials. Among the featured advocates were Kareem Edwards and Sarita Edwards, parents and founders of The E.WE Foundation. They share their experience as parents of Elijah, who has a rare disease, and how they have embraced patient advocacy. Hear the inspiring story here!
Handi-Link on CJAM 99.1 FM
Cam Wells | September 28, 2023
Handi-Link on CJAM 99.1 FM focuses on disability issues. Host Cam Wells will explore all sides of this comparing and contrasting with able bodied life. Featured Speakers/Guests: Dr. Gail Harrison, Demmler CMV, Kareem and Sarita Edwards, EWE Foundation, Jessica Corkran, ECD Global Alliance. Check out the episode!
Horizon Therapeutics plc Announces 2023 #RAREis Global Advocate Grant Recipients
Business Wire | July 27, 2023
DUBLIN–(BUSINESS WIRE)–Horizon Therapeutics plc (Nasdaq: HZNP) today announced the 50 awardees from around the world selected to receive the 2023 #RAREis™ Global Advocate Grant. These rare disease patient advocacy organizations will receive a one-time grant of $5,000 to establish new programs, develop educational resources and expand their current offerings to support their disease communities. Read the press release!
Community Impact Grant Spotlight: The E.WE Foundation
Madison Visionary Partners | Melissa Davison | June 8, 2023
Parents and caregivers of children with special health needs experience considerable strain and stress when caring for their children. Additionally, siblings have a similar burden because parents might spend more time with their child with a disability. To manage these challenges, parents report the need for mental health care for themselves and their children, but many families go without these services. The E.WE Foundation understands the enormous burden of caregiving and how it can decrease a parent’s ability to provide care, impacting the child’s health, the parents, siblings, and the overall functioning family. Read the article!
Challenges of a General Diagnosis: Parents Persevere and Wonder What Genetic Differences Account for their Child’s Unexpected Health
WCG Patient Forum | Steve Smith | March 29, 2023
The WCG Patient Forum interviews elevate the voices of expert patients, patient advocates, and professionals in health care and drug development who speak of issues and solutions of critical value to patients. In this interview Steve Smith, WCG President of Patient Advocacy sits down with Sarita Edwards, expert parent advocate, CEO & President. Watch the interview!
Rare Community Profiles: How the #RAREis Global Advocate Grant Supported the E. WE Foundation: A Discussion with Sarita Edwards
Patient Worthy | Jessica Lynn | March 29, 2023
Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more. Sarita Edwards of the E. WE Foundation, a grant awardee in 2022, recently shared her journey in rare disease, why advocacy is so important, and how the #RAREis Global Advocate Grant has advanced the Foundation’s offerings. Read the article!
Elijah Defying All of the Trisomy 18 Odds
Global Genes Stories | Sarita Edwards | March 17, 2023
March is Trisomy Awareness Month. March 18 is Trisomy 18 Awareness Day. It was chosen specifically because it represents 3 chromosomes on the 18th chromosome. In honor of Trisomy Awareness, Global Genes asked Sarita to write a guest blog about their connection to Trisomy and the work they are doing for the community. Read the blog post!
ONCE UPON A GENE – EPISODE 178 – Exhausted and Energized
Once Upon A Gene Podcast | Effie Parks | March 16, 2023
There’s power in storytelling- for the listener and the storyteller. A Rare Collection is a monthly series featuring people from the rare disease community, sharing a story with a common theme. I have 3 powerhouse advocacy queens on the show today. All of them were in Washington DC for Rare Disease Week advocating on behalf of our entire community. I’ve had the pleasure to work with all of them in some capacity and they inspire me daily. Please have a listen to their stories – hear from Annie Kennedy, rare disease advocate with the EveryLife Foundation, Sarita Edwards, rare mama and co-founder of the E.WE Foundation, and Abbey Hauser, Ehlers-Danlos patient and rare disease advocate and board member with Team Telomere. Listen to the episode!
Kareem and Sarita Edwards, The E.WE Foundation
1 of 20 Podcast | Jonathan Cappiello | December 5, 2022
On today’s episode, Jonathan sits down with Kareem and Sarita Edwards. They are parents to Elijah who has Trisomy 18, otherwise known as Edwards Syndrome. They discuss their non-profit organization “The E. WE Foundation”, named after Elijah. Their foundation’s mission is 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 advocacy, education, and public policy efforts. And they discuss their journey with Elijah from their everyday life, their ups and downs, and everything in between with being Elijah’s parents. Listen to the episode!
Sarita Edwards, Patient Advocate
The Health Design Podcast | Dr. Moyez Jiwa | November 14, 2022
BJ STUDENT ADVOCATES ON AFFLICTED BROTHER’S BEHALF AT GLOBAL ADVOCACY SUMMIT
Madison City Schools | September 19, 2022
Bob Jones student Rian Edwards recently took part in the Global Genes summit in San Diego to advocate on behalf of her brother who has a rare genetic disease. Elijah Edwards, a kindergartner at Rainbow Elementary, has Edwards Syndrome, Trisomy 18, caused by the presence of a third copy of all or part of chromosome 18 which can cause abnormal development in organs and a significantly shorter life expectancy. Read the article!
*Pictured left to right: Rian Edwards, Gail Devers, Sarita Edwards
Solving a diagnostic puzzle: the challenges of rare diseases
Tiny Expeditions | Chris Powell & Dr. Sarah Sharman | September 13, 2022
And just like that, it is the Season 3 finale. This season, we began our journey by learning how genetics can uncover distant relatives you’ve never met. We talked about genomic data access and privacy issues. We also discovered how genomic technology is helping scientists prevent, diagnose, and treat cancer and neurodegenerative diseases. For our season finale, we are exploring the world of rare disease research and advocacy. In the United States, a disease is rare when it affects fewer than 200,000 people. There are more than 7,000 identified rare diseases. Although individually they are each uncommon, they collectively affect 25 to 30 million people in the United States alone. Read more and listen to the podcast episode!
Rare Disease Difference Makers®
Engage Health | Skylar Jackson & Allison Bones | August 22, 2022
This month, Elijah Edwards will reach a milestone in his young life. He will attend his first day of kindergarten. One might think “OK, what’s so special about that? Thousands of five-year-old children start kindergarten each year.” What is unique is that Elijah was diagnosed in utero with Trisomy-18 (or Edwards Syndrome), a rare and very severe genetic condition that affects a child’s growth and development and can often be fatal within the first year of life. After learning this news at 22 1/2 weeks, his parents, Kareem and Sarita Edwards were given little hope that Elijah would survive the remainder of the pregnancy, much less his first year of life. Read the full article.
Rare Leader: Sarita Edwards, Founder, President, and CEO of The E.WE Foundation
Global Genes | Daniel Levine | August 4, 2022
Guest opinion: Postpartum Medicaid extension brings glimmer of hope for new mothers in Alabama
AL.com | Guest Opinion | Whit Sides | May 08, 2022
On Mother’s Day in 2014, I found out I was pregnant. For me, the existential dread set in just as deeply as the morning sickness.
Motherhood and its crushing weight had been drilled into me my entire life. I told myself it was too hard, that I just wasn’t strong enough to handle parenthood and all its pressures. And I feared that my family’s legacy would repeat itself. Read the full article.
Trisomy Awareness Month: Empowering Hope
SOFT UK | Kate Hart | March 31, 2022
We spoke to an amazing couple, Sarita and Kareem Edwards about their incredible 5 year old son, Elijah with full Trisomy 18. It’s an inspirational way to end off #TrisomyAwarenessMonth as he is so well for a child with this condition. The podcast includes an endearing guest appearance by Elijah himself. It’s also a wonderful opportunity to hear from a Dad when we discussed how this diagnosis affected them as a couple. It’s all summed up with their message of hope and love at the end. Watch the live recording!
Trisomy Awareness Month
WACE AM 730 RADIO | Joe Ott | March 7, 2022
WACE AM 730 Inspirational Radio host Joe Ott invites Kareem and Sarita to discuss Trisomy 18, Edwards Syndrome for Trisomy Awareness Month. WACE serves the western Massachusetts area, in Chicopee, Massachusetts. Listen to their conversation below.
Presenting the 10th Annual WEGO Health Awards Winners
Grady Stewart | WEGO Health | October 2021
After a decade of the WEGO Health Awards, we continue to be starstruck by the compassion, dedication, and leadership of the patient leader community. Created to honor the efforts of patients and caregivers, the WEGO Health Awards offer an annual recognition of those supporting patient communities and creating change on the industry level. With over 21,000 nominations this year, we’re honored to celebrate more patient leaders than ever before. Across all platforms, channels, and health conditions – this year’s nominees were truly exceptional. Read the full article.
Madison City Schools hosts community mental health fair
WHNT News 19 | Madison Neal | September 13, 2021
MADISON, Ala. – The Madison City Schools mental health coordinator says the COVID-19 pandemic has brought mental health challenges for students. The school district is bringing attention to the importance of students’ mental health through the Mental Health Matters Health Fair happening tomorrow. Madison City Schools Mental Health Coordinator Stephanie Allen says students are facing challenges today that they’ve never had to face before. Read the full article.
What Does “Care Team” Mean To You?
AllStripes | Taylor Kane | August 18, 2021
Four members of the rare disease community describe their experiences with coordinated health care. A care team is a group of health care professionals who work collaboratively with each other and their patients to deliver the highest-quality care possible. Care teams combine medical professionals from multiple different disciplines, such as primary-care providers, nurses, specialists and mental health professionals. Read the full article.
Support: ‘There’s no right or wrong way to go about it’
AllStripes | August 9, 2021
Hey, Check This Out! is a weekly list of content curated with the rare disease community in mind. Sarita Edwards, founder and CEO of Everyone Is We, is also the host of “Being Rare,” a “community conversations platform bringing awareness and exposure to several different topics,” including rare disease. Edwards alternates between bite-size and full-length episodes on topics like balance, shifting resentment into gratitude and expectations from health-care professionals. A July 12 episode is called “One Minute Monday – Support” and manages to include several profound, actionable pieces of advice in just 60 seconds. Read the full article. Listen to the podcast episode – Support.
Awesome Moms of Huntsville: Sarita Edwards
Rocket City Mom | Stephenie Walker | May 10, 2021
Huntsville, AL. One of the beautiful things about parenting are the big impacts that our tiny humans have on our life. For Sarita Edwards, her youngest child changed the course of her career and passions, inspiring her to create a 501c3 nonprofit to benefit other children that face similar struggles to what her son faces with a diagnosis of Edwards Syndrome. Read below to find out more about Sarita’s journey as a healthcare advocate and why we think she’s an Awesome Mom of Huntsville! Read the article…
Interview with Sarita Edwards of the E.WE Foundation
Verity’s Village | Beverly Jacobson | March 29, 2021
Listen in on my conversation with Sarita as she shares about their family’s journey with Trisomy 18 and how that led them to start the E.WE Foundation. Watch the interview…
March is Trisomy Awareness Month
WSFA 12 News | Tonya Terry | March 3, 2021
Montgomery, AL. WSFA News Anchor Tonya Terry sits down with Kareem & Sarita Edwards, parents to a Full Trisomy 18 child and founders of the E.WE Foundation. Watch the interview…
*Pictured clockwise: Tonya Terry, Kareem Edwards, Sarita Edwards
Special Needs Lawyer Christine Matus Speaks With The E.WE Foundation Co-Founder Sarita Edwards
Press Advantage | January 4, 2021
Toms River, New Jersey — Recently, Christine Matus, Esq., founding attorney of The Matus Law Group, had an insightful conversation with Sarita Edwards, co-founder of The E.WE Foundation, a 501(c)(3) healthcare advocacy organization supporting families affected by Edwards Syndrome. The foundation was started by Ms. Edwards and her husband, Kareem, after their son Elijah Wayne was prenatally diagnosed with Full Trisomy 18, or Edwards Syndrome. Read the full story…
*Pictured: Christine Matus
Edwards Family honored with city coin presentation
by John Few | Madison Record | Published Wednesday, March 18, 2020
MADISON – A family who was selected as a finalist for the 2020 Madison’s Family of the Year was honored last week by the city council. The Edwards family, consisting of Kareem and Sarita Edwards, along with their children Josiah, Jeremiah, Elijah, Rian, and Jeffrey, were presented a city coin by Madison City Council president Steve Smith. Read the full story…
Steve, Alice, Leah and Ben Lessmann named Madison’s Family of the Year
by John Few | Madison Record | Published Sunday, January 26, 2020
MADISON – The city of Madison has a new family ambassador. The Lessmann family was named the 2020 Madison Family of the Year on Sunday. Steve, Alice, Leah and Ben Lessmann were recognized during a ceremony at city hall Sunday afternoon. They were one of three finalist families to be nominated for the annual honor.
The other families were the Detulleo family: Glenn and Jen Detulleo with the three children, Ebba, Berlin, and Benham; and the Edwards family: Kareem, Sarita, Jeffrey, Rian, Josiah, Jeremiah, and Elijah. Read the full story… Watch the recap video..
The E.WE Foundation 