We created this guide for living with ALD (Adrenoleukodystrophy) to not only provide medically advised resources and information, but to give families hope.
The content in this Parent Guide and on our website 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. 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.
Resources to Cite for Health Insurance:
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
The Journal of Inherited Metabolic Disease, Volume 44, Issue 3, December 2020, Pages 728-739
Download our Parent’s Guide
“If I was given this up front I would have seen the hope. I would have understood newborn screening isn’t a crystal ball into seeing how my son would die, instead I was seeing the opportunity for preventative measures takes to potentially save my son’s life. I would have seen the community instead of empty words on the internet.”
– Sarah Tong, ALD Newborn Screen Parent (Massachusetts)
Descarga Nuestra Guía Para Padres en Español
“Recibir esta guía después del diagnóstico nos ayudo a entender que la ALD no es una sentencia de muerte, sino la oportunidad de luchar para que mi hijo tenga un excelente equipo de medicos que le ayuden a tener una vida normal como cualquier niño de su edad. La guía no solo ha sido de gran ayuda para mi familia y amigos sino también para los medicos de él , como su neuróloga y pediatra. La guía para padres y la comunidad de ALD son excelentes recursos para saber que no estamos solos en este camino”én para los medicos de él , como su neuróloga y pediatra. La guía para padres y la comunidad de ALD son excelentes recursos para saber que no estamos solos en este camino”
– Kiomara Gonzalez, ALD mom (Georgia)
