ALD Connect

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/

Are you interested in sharing your family’s monitoring experience with ALD Connect? We are specifically looking to connect with families of boys who have a Variant of Uncertain Significance (VUS) in the ABCD1 gene and are currently in the monitoring stage. Your feedback will help us better understand parent perspectives during and identify the support and resources families need most.

Please reach out to us at [email protected]!

Just announced! We are proud to expand our research funding efforts through our Breakthrough Research Fund with the launch of a new Collaborative Research RFP, alongside our Emerging Investigators RFP.

Together, these opportunities reflect our commitment to accelerating research and advancing progress in ALD. The Collaborative Research grants will bring multidisciplinary teams together to tackle high-impact questions, drive coordinated progress across institutions, and address unmet needs in our community. The Emerging Investigators grants support the next generation of researchers with innovative ideas and help spark their entry into ALD research.

This is a meaningful milestone for our community. Because of your engagement, partnership, and shared commitment, we are now in a position to directly invest in both bold, collaborative science and the individuals who will carry this work forward.

We look forward to reviewing applications!