The E.WE Foundation

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

10/10/2025

I had the pleasure of speaking at the 24th Annual Fall Social Work Conference hosted by the University of Alabama School of Social Work today on Centering the Rare Voice: Best Practices in Advocacy for Medically Complex Families.

This session introduced a family-centered framework for advocacy grounded in evidence-based practices, lived experience, and justice-focused leadership. Through data-driven insights and meaningful dialogue, participants explored strategies to build cross-sector partnerships that truly center the voices of medically fragile children and their caregivers.

I’m grateful for the opportunity to share space and elevate conversations that drive impact and equity for rare and medically complex communities.

09/04/2025

Did you know?

Newborn screening happens in the first 24–48 hours of life and checks for dozens of rare but serious conditions. Early detection can mean the difference between lifelong complications and lifesaving care.

But access isn’t equal — some conditions aren’t included in every state, leaving families in the dark. That’s why advocacy matters.

Learn more about our efforts: theewefoundation.org/newbornscreening

09/01/2025

September is Newborn Screening Awareness Month!

Every baby deserves a healthy start in life—and newborn screening makes that possible. This month, we’ll be sharing stories, facts, and advocacy updates to shine a light on why NBS matters, especially for families impacted by rare diseases. Together, we can turn awareness into action.

08/29/2025

Our Research Intern, Nisma Abdraman, dedicated her final project to examining the possibilities of gene therapy for trisomy disorders, including Trisomy 18. Her research explored emerging science, current challenges, and the potential for innovative therapies to improve quality of life for individuals with rare genetic conditions. While gene therapy for trisomy disorders is still in its early stages, Nisma’s work underscores the importance of continued research, collaboration, and advocacy to bring hope to families worldwide.

Thank you Nisma for your commitment to advancing knowledge and keeping the rare disease community informed about what’s on the horizon. Watch the recording:

Research Intern, Fall 2023, Final Project Presentation

08/27/2025

Our Advocacy Intern, Harlie Williams, dedicated her final project to exploring Newborn Screening Advocacy—with a focus on creating a survey to identify gaps in access and education from a parental perspective.

Newborn screening is a critical step in detecting serious health conditions early, but not all families have equal access to information or resources. Harlie’s work emphasizes the importance of listening to parents’ voices to better understand barriers and improve outcomes for newborns—especially in the rare disease community.

We are proud of Harlie’s passion for bridging these gaps and for helping to ensure every baby gets the healthiest start possible. Watch the recording:

Advocacy Intern, Fall 2023, Final Project PresentationTrisomy 18 and Newborn Screening Advocacy

08/26/2025

Our Mental Health Intern, Vy Quynh Vu, presented her final project, shining a light on the critical connection between mental health and the rare disease journey. Vy explored the unique challenges faced by families, caregivers, and individuals living with rare diseases—and the importance of accessible mental health resources to support them.

Her work reminds us that advocacy is not only about treatments and policies—it’s about the whole person, their well-being, and their resilience. We are proud of Vy for her thoughtful research and her dedication to helping families feel supported, understood, and never alone. Watch the recording:

Mental Health Intern, Fall 2023, Final Project PresentationMental Health Campaign

08/25/2025

Kim Nguyen, E.WE Foundation intern presented her final project: Biotech Funding and Social Media Management highlighting how competitive and challenging nonprofit funding can be—and why identifying potential donations is critical to sustaining our mission. Kim also highlighted the vital role of social media messaging in making sure families, advocates, and supporters can find us, connect with us, and join our work.

Her insights remind us that advocacy isn’t just about the cause—it’s about building the resources and visibility to keep that cause moving forward. Thank you Kim for your passion to amplifying our work and expanding our reach. Watch the recording:

General Intern, Fall 2023, Final Project Presentation

08/23/2025

We were honored to host Jaimie Lopez-Alvarez, E.WE Foundation intern, for her presentation: Prenatal Testing: A Health Equity Project.

Trisomy 18 is often identified through prenatal testing—making it essential for families to have clear, accessible, and accurate information to support informed decision-making and better health outcomes. Jaimie’s work underscores the importance of equitable access to education, resources, and compassionate care for all families navigating this diagnosis.

Thank you Jaimie for highlighting this subject. Together, we can bridge the gaps in prenatal testing education. Watch the recording:

Health Equity Intern, Fall 2023, Final Project Presentation

08/22/2025

Back in 2024, we hosted a Health Equity Community Workshop to educate, engage, and empower participants on the importance of health equity and its impact on rare diseases. The workshop was spearheaded by Vivian Duong, 2023 E.WE Foundation summer intern.

The continuing education workshop highlighted:
✨ Health disparities
✨ Social determinants of health
✨ The factors driving unequal access to care and health outcomes

We’re so proud of Vivian for leading this important conversation and helping us raise awareness about health equity in the rare disease landscape. Watch the recording:

The Health Equity Community Workshop is an organized event designed to educate, engage, and empower participants on the concept of health equity and its sign...

08/21/2025

From the U.S. Capitol to our local communities - advocacy never stops! Learn about our policy priorities https://theewefoundation.org/policy