ALD Connect

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

At ALD Connect, we recognize the power of connection. We also know that not everyone can travel to conferences, and meaningful community should not depend on that.

This month, our Patient-Led Planning Committee introduced a new idea: ALD Connect(ions).

The goal is simple. Support small, local gatherings so community members can connect closer to home. Coffee, lunch, dinner, whatever feels right. ALD Connect would help offset the cost so it is easier to bring people together.

We are exploring this as a new initiative and would love your input. Would you be interested in hosting or attending a local meetup? Let us know below and feel free to share where you are located.

Our 2025 Annual Report is complete, reflecting a year of meaningful progress, strong collaboration, and continued growth across our work. We advanced key initiatives, strengthened partnerships, and reached important milestones along the way. We have continued that progress into 2026 and remain energized to carry that momentum forward.

Read it here:https://aldconnect.org/wp-content/uploads/2026/04/ALD-Connect-2025-Annual-Report.pdf