Our Programs
We're here to help.
Join Facebook Groups
Patient Registry
Clinical Care Packet
MONTHLY VIRTUAL CAREGIVER MEET-UP
Our Partners
WHY WE LOVE DEEP
Many people with ADSLD also have Developmental Epileptic Encephalopathy (or DEE). DEEP is a coalition of patient groups that share this symptom. The resource center has an excellent stash of webinars on nearly every topic related to DEE and if you don't see what you need, we can make it happen!
Do you need a break?
We are pleased to introduce the Strong Wings Caregiver Respite Retreat Grant. Caring for a child with a severe Disorder of Purine Metabolism like ADSL Deficiency is a profound act of love, and one that asks everything, every day. Many caregivers go years without a moment to breathe.
This grant is here to change that.
What is a Respite Retreat?
A respite retreat is a structured, temporary break for caregivers to rest, recharge, and find support away from their daily responsibilities. These retreats often focus on emotional renewal, community building, and personal care.