ALD Connect

06/17/2026

Join us this week!

Patient-Led Planning Committee (June 17)
We will share updates and gather input on initiatives. Your engagement is essential as we work together to advance research and improve outcomes for the ALD community. This group operates on a drop-in basis, meaning we welcome anyone who is able to attend any given month without asking for commitments for future meetings.

The Fine Art of Looking Fine When You're Not Fine (June 18)
"I'm fine" can become a habit, even when it's far from the truth. For many individuals and families affected by ALD, appearing strong feels necessary. We protect others, manage responsibilities, and push through difficult moments, often while carrying worries and emotions that remain unseen. This call will offer an opportunity to reflect, connect with others who understand, and have an honest conversation about what it means to keep going when life feels anything but fine.

06/16/2026

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.

06/14/2026

Alexis was one of our ALD Connect Ambassadors of the Year in 2024. We are grateful for her willingness to share her experience, support families, and advocate for the ALD community. Thank you, Alexis, for always answering our call to action. 💙

06/13/2026

In Case You Missed It...

Our "Transplant: Donor Search and Selection" webinar is posted on our YouTube channel.

Thank you to Kelly Lazration from NMDP and Dr. Troy Lund from the University of Minnesota for an informative presentation on donor search and selection for hematopoietic cell transplantation (HCT). Thank you to Kiomara Gonzalez for sharing her parent perspective.

Transplant for cerebral ALD is a complex and nuanced topic, and we appreciate their expertise in helping our community better understand the process and considerations involved in donor selection.

Please remember that every situation is unique. If you have questions about transplant or treatment options, consult your physician.

https://youtu.be/FwKydOvGDcU

06/09/2026

We are excited to share some big news. We are expanding our international advocacy network to include additional organizations and advocates from around the world. By building stronger connections across the global community, we can share resources, learn from one another, and expand access to expertise and information. Our goal is to work together to support more patients and families affected by ALD, regardless of where they live. Stay tuned for more updates!

06/06/2026

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!

06/02/2026

In Case You Missed It!

Our "Connected, Not Consumed" webinar is posted on our YouTube channel!

Dr. Torri Jones, from Children’s Hospital of Philadelphia (CHOP)Je...

05/19/2026

Join us for "Connected, Not Consumed", an upcoming webinar focused on navigating life with ALD and maintaining balance, boundaries, and emotional well-being. Living with a rare disease can feel overwhelming, especially when symptom management, advocacy, caregiving, monitoring, and constant information-sharing become part of everyday life. This webinar will explore how individuals and families can stay informed, engaged, and connected to the ALD community without feeling consumed by it.

The webinar will feature Dr. Torri Jones, from Children’s Hospital of Philadelphia (CHOP), and Jesse Torrey, MA, LPC, ALD Connect Board Member, who will share perspectives on navigating the emotional realities of ALD while remaining connected in ways that feel supportive and sustainable. Topics will include emotional burnout, navigating social media and online support spaces, managing uncertainty, setting healthy boundaries, coping with symptoms and stressors related to ALD, and finding sustainable ways to participate in advocacy and community life.

The discussion will be relevant for symptomatic individuals living with ALD, parents of minor children with ALD, individuals in the monitoring stage, caregivers, and long-time members of the community.

Whether you are personally affected by ALD, caring for a loved one, or supporting a child through diagnosis or monitoring, this session aims to provide a supportive space for reflection, connection, and conversation.

Join us on May 28, 2026 at 7pm Eastern. Register here: https://lp.constantcontactpages.com/ev/reg/kdazsqt

05/16/2026

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/