(Note: For current advancements in Alpers, please see the Facebook news feed at the bottom of this page.)
Thank you for visiting Alpers Awareness/Veronica’s Voyage. This site serves to raise awareness of Alpers Syndrome – and celebrate the life of our beloved Veronica – through news, events, and other resources. If you are reading this because of a loved one, please know that you are not alone. We are here to help you in any way we can. Please refer to What Do I Do Now? for help and check back often for updates. You may follow our sweet Veronica’s Voyage on CaringBridge.org and on our Veronica’s Voyage page. You may also follow us on Facebook.
Alpers Syndrome, also known as Alpers-Huttenlocher Syndrome, is genetically inherited and affects the production of energy on a cellular level. Sadly, there is currently no treatment or cure. It is one of many mitochondrial illnesses and can be diagnosed with a DNA test of the POLG1 gene. Parents of children with Alpers do not develop Alpers because they carry a dominant, healthy POLG1 gene. However, they also possess a mutation of the gene which can be unknowingly passed on to their child. Alpers occurs only in children who receive the recessive gene from both parents. It is believed the birth rate of children born with Alpers is 1 in 50,000. 1 in 110 adults in the United States are recessive carriers. These numbers are growing as Alpers is more properly diagnosed. For parents who both have the recessive gene, there is a 1 in 4 chance of a child having Alpers. It is our hope and goal, through education, reduced-cost prenatal genetic testing, and research into alternative methods such as identifying markers in paternal blood tests, that no other child or family need endure the same horrific journey.