ALD Connect

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.

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

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