The E.WE Foundation

10/09/2026

Today, I had the privilege of presenting at the Annual Title IV-E Child Welfare Fall Social Work Conference hosted by the University of Alabama School of Social Work.

I led an interactive workshop entitled Leading Beyond the Title: Practical Strategies for Leading Through Complex Human Service Environments, exploring leadership as a skill and practice, not just a title.

We explored what it means to lead through complexity, build trust, use influence, navigate uncertainty, and turn insight into action. We also examined how our everyday leadership behaviors shape our teams, our organizations, and the people and families we serve.

Thank you to the University of Alabama School of Social Work and the conference organizers for creating space for these conversations. I'm grateful for the opportunity to engage with other professionals supporting children and families.

Presentation image courtesy of Asharia Conway.

06/26/2026

THAT'S A WRAP!

The 2026 LEAP into Advocacy Summit has officially come to a close, and what an incredible journey it has been!

Over the past two days, we welcomed advocates, families, healthcare professionals, researchers, students, policymakers, and community leaders who came together with one shared purpose—to improve the lives of individuals and families affected by rare diseases and complex health conditions.

Together, we explored:
💙 Rare disease discovery and research
💚 Family-centered care
💛 Patient advocacy and policy
💙 Student innovation and leadership
💚 Lived experiences that inspire change
💛 Building stronger partnerships and communities

To our speakers, sponsors, volunteers, planning committee, and every attendee—thank you for sharing your knowledge, your passion, and your voice. Your willingness to learn from one another and advocate for meaningful change is what makes LEAP so special.

The conversations don't end here. The connections we've built and the ideas we've shared will continue to shape advocacy, healthcare, research, and policy long after the summit has ended.

Thank you for being part of LEAP 2026.

We'll see you in 2027!

06/22/2026

The LEAP into Advocacy Summit is bringing more than education and advocacy—we're bringing the energy too!

We're excited to welcome John B. Kimber Jr., musical artist and guitarist from Birmingham, Alabama, as our featured live entertainment!

Known for his dynamic performances and soulful sound, John will help create an unforgettable experience as we come together to learn, connect, and inspire change.

Join us as we celebrate advocacy, leadership, and community—with a little live music to keep us moving forward.

Register today: www.theewefoundation.org/leapsummit

06/16/2026

In just over a week, advocates, clinicians, researchers, students, community leaders, and families from around the world will come together in Huntsville, Alabama for the 2026 LEAP into Advocacy Summit.

This year is especially meaningful for The E.WE Foundation because LEAP 2026 marks our first-ever hybrid Summit, expanding access and creating new opportunities for participation both in person and virtually.

What began as a vision to connect rare disease communities through education and advocacy has grown into a global interdisciplinary learning experience focused on advancing health equity, strengthening systems of support, and improving outcomes for medically complex families.

Join us for a Networking Meet & Greet on June 24, 2026 and the LEAP Summit on June 25, 2026.

The event is approved for Continuing Education for some healthcare professionals.

🔗 Register today: https://theewefoundation.org/leapsummit

06/02/2026

⏰ The countdown is on! Only 23 Days Until LEAP Summit 2026!

Join advocates, clinicians, researchers, students, industry leaders, and families from around the world for the 2026 LEAP into Advocacy Summit, a global interdisciplinary learning experience focused on advancing rare disease advocacy, strengthening systems navigation, and bridging science with community-centered practice.

🌎 Global Participation
🤝 Multi-Sector Collaboration
🎤 Expert-Led Sessions
💻 Hybrid Experience
🎓 Continuing Education Opportunities

Whether you're a healthcare professional, researcher, advocate, caregiver, student, or community leader, LEAP offers a unique opportunity to learn, connect, and drive meaningful change for rare and medically complex communities.

Together, we LEAP forward!

🔗 Register today: https://theewefoundation.org/leapsummit

05/29/2026

New Self-Guided Learning Experience Available!

Mental health is an essential part of every care journey, and no family should have to navigate it alone. As we wrap up mental health month, The E.WE Foundation is proud to introduce our latest self-guided learning module: Mental Health in the Rare Disease Community.

Whether you're a parent, caregiver, healthcare professional, educator, advocate, or community member, this course offers practical insights and meaningful perspectives to support mental wellness.

Access the self-guided learning module here: https://youtu.be/s056vRtDRrI?si=5dVPCsMDN8VzqCv-

Together, we can build a more informed, compassionate, and supportive community for individuals and families living with rare and complex conditions.

Mental health matters in every diagnosis, every journey, and every ...

05/26/2026

The E.WE Foundation had the opportunity to participate in the Annual North Alabama Health & Wellness Fair at Calhoun Community College!

We enjoyed connecting with families, community leaders, healthcare advocates, and local organizations committed to improving health, wellness, and access to resources across North Alabama.

Thank you to the organizers, sponsors, volunteers, and everyone who stopped by our table to learn more about the work we do!

We are grateful to be invited and for every opportunity to advocate, educate, and build meaningful connections in our community.

05/26/2026

Mental health support shouldn’t be a privilege, but for many families living with rare and medically complex conditions, access to care remains out of reach.

Too many face barriers like:
• Long waitlists
• Limited specialists
• Geographic isolation
• Financial challenges
• Stigma surrounding mental health

Families navigating complex medical journeys deserve mental health support that is accessible, informed, and compassionate. At E.WE Foundation, we believe in creating spaces, resources, and conversations that help close care gaps because mental health matters for every diagnosis, every caregiver, and every family.

https://theewefoundation.org/zebra

05/21/2026

Mental wellness starts with small actions that create meaningful impact. This month, we invite you to take a few simple steps to support mental health.

✔ Learn
Take time to better understand the emotional impact rare diseases can have on individuals, caregivers, siblings, and families.

✔ Share
Share resources, stories, and support. You never know who may need to hear that they are not alone.

✔ Start a conversation
Open conversations help break stigma and create safe spaces for honesty, vulnerability, and healing.

✔ Check on a caregiver
Behind appointments, medications, and advocacy work is often someone carrying exhaustion, fear, and emotional stress silently.

Sometimes the smallest gestures, —a text, a call, a simple “How are you really doing?”—can make a difference. Mental health matters at every stage of the journey.

https://theewefoundation.org/mentalhealth

05/12/2026

Living with a rare or medically complex diagnosis can impact the entire family emotionally, mentally, and physically. Too often, those struggles go unseen.

That’s why the E.WE Foundation created our Mental Health Resource Center.

Our Resource Center offers:
🟩 Coping strategies
🟩 Family-centered support
🟩 Training for professionals
🟩 Tools for resilience

Whether you’re a caregiver, parent, sibling, advocate, educator, or healthcare professional—support matters, and so does your mental well-being. You are not alone.

Visit https://theewefoundation.org/mentalhealth to learn more.