Family Support
For information on monitoring, treatment, reproductive options & resources such as a list of ALD experts, please visit our other site:
A Parent's Guide to ALD
A Parent's Guide to ALD
The content in our Parent Guide and has been reviewed and approved by our Board-Certified Clinician Members on the Board of Directors at ALD Alliance, all of whom are experts in ALD. These monitoring protocols were derived from the published medical guidelines listed below:
Adrenoleukodystrophy: Guidance for Adrenal Surveillance in Males Identified by Newborn Screen
The Journal of Clinical Endocrinology & Metabolism, Volume 103, Issue 11, November 2018, Pages 4324–4331
MRI surveillance of boys with X-linked adrenoleukodystrophy identified by newborn screening: Meta-analysis and consensus guidelines The Journal of Inherited Metabolic Disease, Volume 44, Issue 3, December 2020, Pages 728-739
Patient families: If your health insurance company is denying your child coverage for a monitoring procedure, please cite these resources in your claim or forward these publications to the doctor caring for your child so that they may help advocate on your child's behalf.
To request a printed copy of this guide, please email: [email protected]
A Spanish version of the guide is also available for download via the link above.
Additional guidelines have since been published that incorporate the medical monitoring of adult men with ALD (symptomatic or asymptomatic):
International Recommendations for the Diagnosis and Management of Patients With Adrenoleukodystrophy: A Consensus-Based Approach Neurology 2022 Nov 22;99(21): Pages 940-951.
Adrenoleukodystrophy: Guidance for Adrenal Surveillance in Males Identified by Newborn Screen
The Journal of Clinical Endocrinology & Metabolism, Volume 103, Issue 11, November 2018, Pages 4324–4331
MRI surveillance of boys with X-linked adrenoleukodystrophy identified by newborn screening: Meta-analysis and consensus guidelines The Journal of Inherited Metabolic Disease, Volume 44, Issue 3, December 2020, Pages 728-739
Patient families: If your health insurance company is denying your child coverage for a monitoring procedure, please cite these resources in your claim or forward these publications to the doctor caring for your child so that they may help advocate on your child's behalf.
To request a printed copy of this guide, please email: [email protected]
A Spanish version of the guide is also available for download via the link above.
Additional guidelines have since been published that incorporate the medical monitoring of adult men with ALD (symptomatic or asymptomatic):
International Recommendations for the Diagnosis and Management of Patients With Adrenoleukodystrophy: A Consensus-Based Approach Neurology 2022 Nov 22;99(21): Pages 940-951.
Care Packages for Newborn Screen Families
If your baby boy was diagnosed through newborn screening in the United States in the last year, please register for one of our free care packages. The items provided are meant to help guide you through your diagnosis and make the monitoring process easier. You can find more about this program here:
If your baby boy was diagnosed through newborn screening in the United States in the last year, please register for one of our free care packages. The items provided are meant to help guide you through your diagnosis and make the monitoring process easier. You can find more about this program here:
Financial Support
Aidan’s Gifts helps families in the United States who face extreme financial stress attributed to the costs associated with caring for a child with ALD.
Requests are granted on a case-by-case basis and are limited to meeting needs that will enable an affected family to provide the best possible care for their child.
Many times families come to the Foundation for assistance with a unique need – travel expenses associated with treatment, a wheelchair lift to enable a family to safely travel with their child or assistance in purchasing a vehicle to accommodate their child’s equipment needs. These are only a few examples of ways Aidan’s Gifts have helped our families focus on what matters most – caring for their child!
For more information on Aidan’s Gifts, please contact: Elisa Seeger [email protected].
Aidan’s Gifts helps families in the United States who face extreme financial stress attributed to the costs associated with caring for a child with ALD.
Requests are granted on a case-by-case basis and are limited to meeting needs that will enable an affected family to provide the best possible care for their child.
Many times families come to the Foundation for assistance with a unique need – travel expenses associated with treatment, a wheelchair lift to enable a family to safely travel with their child or assistance in purchasing a vehicle to accommodate their child’s equipment needs. These are only a few examples of ways Aidan’s Gifts have helped our families focus on what matters most – caring for their child!
For more information on Aidan’s Gifts, please contact: Elisa Seeger [email protected].
Free Children's Book for the siblings of children receiving a late diagnosis of cerebral ALD
The book was published by Alex TLC, a charity in the UK that provides support and information to people affected by any of the leukodystrophy conditions worldwide. The book is meant to support the siblings of children diagnosed with childhood cerebral adrenoleukodystrophy (CCALD). The primary goal is to support children and their families to build emotional resilience, and openness to talk and ask questions about a diagnosis of CCALD:
The book was published by Alex TLC, a charity in the UK that provides support and information to people affected by any of the leukodystrophy conditions worldwide. The book is meant to support the siblings of children diagnosed with childhood cerebral adrenoleukodystrophy (CCALD). The primary goal is to support children and their families to build emotional resilience, and openness to talk and ask questions about a diagnosis of CCALD:
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