When we think about health, we think about the person as a whole. We are making strides every day to ensure that boys with ALD have the best chance at a healthy life through newborn screening; but it is so important to us that mental health is a part of that goal. Just as our Parents Guide to ALD has provided a road map for monitoring and treatment, we are hopeful that this resource will help our families cope with the mental impact of this diagnosis.
This project would not have been possible without Dr. Rene Pierpont & Dr. Ashley Isaia of the University of Minnesota (read their supporting publication on this topic here) and many caring ALD families who want you to know that you are not alone.
This project would not have been possible without Dr. Rene Pierpont & Dr. Ashley Isaia of the University of Minnesota (read their supporting publication on this topic here) and many caring ALD families who want you to know that you are not alone.
Coping with a Newborn Screening DiagnosisIf your child was diagnosed via newborn screening, or if your child was diagnosed because of a family member's newborn screening, please join us here.
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Preparing for Cerebral ALD Treatment
If you have received the news that your child needs treatment for ALD (following an MRI indicating cerebral ALD), we hope you will find the advice here to be helpful and strengthening.
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Adjusting to Life after TreatmentLife after treatment will not be the same as it was before, nor will it be the same for each child. Click below to spend some time with the thoughts of other parents who have been there.
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Thank you to all our families that shared their stories, wisdom, and photos to help the next generation of impacted families. Thank you to bluebird bio for your support in making this resource possible.
