ALD Connect

We are excited to continue expanding our Global Advocacy Network! We have partnered with Alex TLC, Fundación Lautaro Te Necesita, and Remember the Girls for many years, and we look forward to strengthening international collaboration across the ALD community.

This year, advocates from around the world will join us in Salt Lake City, Utah, United States, for our 2026 Annual Meeting and Patient Learning Academy.

We will welcome:

• Dr. Anna Majchrowska-Kielak, ABCD1 Foundation
• Linda Franco, ALD Brasil
• Riham Badawy, ALD Hope
• Karen Harrison, Alex TLC
• María Teresa Martínez, Asociación ALD-X España
• Claire Kingsley, Leukodystrophy Australia
• Alessandro Maggi, Manus Alba
• Taylor Kane, Remember the Girls
• Dr. Eul S*k Jung, South Korea

These advocates and leaders represent organizations and communities across multiple countries and bring valuable perspectives on access, awareness, care, education, research, and support for individuals and families affected by ALD. Their participation reflects a shared commitment to learning from one another, building meaningful connections, and advancing efforts to improve outcomes for the global ALD community.

We are excited to share our very first "ALD Connections" meetup! Aaron and Dean recently got together for dinner and great conversation about ALD.

Our next ALD Connections gathering is scheduled for June 20th in New Jersey. If you're interested in attending, we'd love to hear from you! Comment below or email [email protected].

More opportunities to connect coming soon!

Our May Community Calls are posted! Register using the link below.

Join us this month for our Structure Mental Health call, "Laughing Through the Leaks". This will be a candid and supportive conversation about bladder accidents, urgency, and urinary symptoms in ALD. These challenges can be frustrating, embarrassing, isolating, and sometimes unexpectedly funny. Through open discussion and shared experiences, we hope to create space for honesty, connection, and a little laughter along the way. Whether you are personally affected, supporting a loved one, or simply looking to learn from others in the community, all are welcome.

https://aldconnect.org/get-involved/community-calendar/