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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 page will help our families cope with the mental impact of this diagnosis.

This is an ongoing project, with the help of Dr. Rene Pierpont & Dr. Ashley Isaia of the University of Minnesota and many caring ALD families who want you to know that you are not alone.  Please stay tuned for more content as we continue to build this resource.

Coping with a Newborn Screening Diagnosis

If 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.

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.

 Adjusting to Life after Treatment

Life 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.
Thank you to all our families that shared their stories and wisdom to help the next generation of impacted families.  Thank you to bluebird bio for your support in making this resource possible.