The E.WE Foundation

03/04/2026

What is Trisomy? Trisomy means an extra chromosome. Trisomy 18 happens when there’s an extra copy of chromosome 18. This alters development and medical needs, and life expectancy, but it doesn’t erase joy, growth, or connection.

Families and clinicians can navigate this complex journey together, and we’re here to support every step! Learn how at theewefoundation.org!

Image: WebMD

03/01/2026

March is — a time to honor families, raise awareness, and shine a light on trisomy conditions. This month, we’ll share stories, resources, and moments that matter.

Join us as we celebrate families, strengthen our advocacy, and push for equitable care for all children, no matter their diagnosis.

Every life has value. Every voice matters.

Happy Trisomy Awareness Month!

03/01/2026

Rare diseases affect 1 in 10 people, and behind every diagnosis is a family searching for answers, a researcher pushing boundaries, and an advocate driving change.

That’s why LEAP into Advocacy Summit 2026 matters. This isn’t just another conference—it’s where science meets policy, patients meet innovators, and knowledge turns into real-world impact.

On June 25, 2026, at the University of Alabama in Huntsville and virtually, leaders from across the rare disease ecosystem will come together to transform knowledge into action—because breakthroughs don’t happen in isolation. They happen when we LEAP together.

Save the date. Join the movement.

03/01/2026

The E.WE Foundation was in Washington, DC for Rare Disease Week, hosted by the EveryLife Foundation for Rare Diseases.

We showed up to ensure families affected by rare and genetic conditions are seen, heard, and represented—not just within one diagnosis, but across the rare disease community as a whole. From policy briefings to meetings with lawmakers, this week was about amplifying patient and caregiver voices, advancing equitable policy, and reinforcing that rare disease is a public health issue.

Representation matters. Presence matters. And sustained advocacy matters.

We’re proud to stand alongside advocates, clinicians, researchers, and organizations from across the country, united by a shared commitment to improving care, access, and outcomes for the 1 in 10 people living with a rare disease.

The work continues—on Capitol Hill and at home.

02/28/2026

Save the Date! Join us for the LEAP into Advocacy Summit 2026 — a hybrid convening bringing together patients, families, advocates, students, professionals, and partners committed to turning knowledge into action.

June 25, 2026, in person + virtual, registration opens soon!

02/28/2026

Today is Rare Disease Day—a day to shine a light on the millions of families navigating conditions that are often misunderstood, underdiagnosed, and overlooked.

At The E.WE Foundation, rare disease advocacy isn’t something we observe once a year—it’s the work we do every single day. From fighting for equitable care, to amplifying family voices, to pushing policy forward, our mission is rooted in one belief: no family should have to walk this journey alone.

Today, we honor every rare disease warrior, caregiver, advocate, and ally. Your stories matter. Your voices matter. Your lives matter.

Rare is many. Rare is strong. Rare is united.

Happy Rare Disease Day!

01/19/2026

Honored to attend today’s Dr. Martin Luther King Jr. Unity Breakfast, hosted by the Delta Theta Lambda Education Foundation of Alpha Phi Alpha Fraternity, Inc. at the Von Braun Center.

Dr. King taught us that progress doesn’t happen through comfort or silence—it happens when people choose courage, community, and sustained action. We're grateful for spaces that bring community leaders together—and especially thankful to Kris Bell from Bank Independent for the invitation.

Moments like these remind us of our why and refuel us for the work ahead.

01/12/2026

Birmingham & Central Alabama friends!

The REACH Disability Resources Fair is happening on January 21, 2026, from 9:00 AM–3:00 PM at Patriot Park in Homewood.

This free community event brings together organizations from across Alabama to share resources, education, and support for children with disabilities and their families.

- Learn about services
- Connect with providers & advocates
- Build community

🔗 Scan the flyer to register!

01/07/2026

We were honored to participate in the North Alabama Education Luncheon, where A+ presented on the state of education in Alabama. As a proud member of the Every Child Alabama Coalition, the E.WE Foundation is grateful to stand alongside partners working to advance equitable education outcomes across our state.

Thank you to the Huntsville Committee of 100, the Decatur City Schools Foundation, and the Every Child Alabama Coalition for helping make this important meeting possible.

12/02/2025

When thinking about which organizations to support, we hope you'll consider The E.WE Foundation, a global healthcare advocacy network for families with rare conditions.

For the first time ever, our year-end giving goal is to raise $25,000 by December 31.

Donate today at https://www.zeffy.com/en-US/donation-form/2025-year-end-giving-campaign-2

11/21/2025

It’s that time of year again — when generosity turns into real, tangible support for families living with rare conditions. Every family deserves hope. Every child deserves compassionate care. Every caregiver deserves community.

The E.WE Foundation exists to make that vision real for families impacted by Trisomy 18 and other rare diseases. Through every diagnosis, hospital stay, or difficult day, we walk alongside families and the professionals who serve them — making sure that no one faces this journey alone.

This year, we’re asking for your help to raise $25,000 by December 31. Your gift fuels the three pillars of our mission — LEAP, ZEBRA, and STRIPE — ensuring every family has access to health, hope, and support. With your generosity, we can:

- Expand LEAP education and advocacy programs to reach more families and professionals.

- Strengthen ZEBRA mental health services for caregivers, parents, and siblings in crisis.

- Provide STRIPE emergency and wraparound assistance to families where the need is greatest.

And, 100% of your donation goes directly to the E.WE Foundation — no transaction fees and no hidden costs!

Please donate today and help us reach our $25,000 goal by December 31. Together, we can make sure no family faces the rare disease journey alone. Thank you for believing in our mission and in the families we serve.

Give Today:

Every family deserves hope. Every child deserves compassionate care. Every caregiver deserves community.The E.WE Foundation exists to make that vision real for families impacted by Trisomy 18 and other rare diseases. Through every diagnosis, hospital stay, or difficult day, we walk alongside familie...

11/06/2025

Join Us for a District-Wide Mental Health Fair!

The E.WE Foundation is proud to be part of Madison City Schools’ upcoming Mental Health Fair on Thursday, November 13 from 5–7 PM at Midtown Elementary School in Madison, AL.

We’ll be there as one of several community resources sharing information, tools, and connections to help families strengthen mental wellness and access vital support.

This free, family-friendly event will include:
- Hands-on wellness activities in the Media Center (hosted by The Enrichment Center)
- A student art showcase reflecting on mental health
- Food trucks, book giveaways, and door prizes!

Stop by our table to say hello, learn more about our advocacy work, and explore ways we can build stronger, healthier communities—together!

📍 Midtown Elementary School, 140B Coefer Blvd, Madison, AL 35758