We at The Evanosky Foundation know that it is difficult to obtain solid medical advice on how to treat or care for patients affected by MLD. Many doctors are unfamiliar with the disease and because more people now use the Internet, incorrect or medically questionable information can quickly spread to the MLD community across the globe. To help provide parents, medical providers and caregivers with accurate information about treating and managing MLD, The Evanosky Foundation has started a MLD Parent Education Program (PEP) that can be accessed by individuals throughout the world.
The Evanosky Foundation has teamed with Dr. Maria Escolar, a well-known expert in MLD progression and care of MLD patients at Children’s Hospital of Pittsburgh, to deliver a web-based video presentation that answers questions she frequently receives from MLD parents. The video is available on the Neurodevelopment Function in Rare Disorders (NFRD) website so that parents, medical professionals, and other caregivers can view the presentations at their leisure, as time permits. The presentations will cover topics such as newborn screening, MLD enzyme replacement therapy (ERT), daily management of MLD, gene therapy, and the status of research involving the repair of the central and peripheral nervous systems. Parents will also be able to e-mail or call Dr. Escolar with questions, comments, or suggestions for topics to discuss in future webisodes.
The benefits of MLD PEP include:
- It delivers a consistent, medically sound message to parents, caregivers and medical providers
- It minimizes inaccurate perceptions and speculations by offering parents, caregivers and medical providers an opportunity to ask clarifying questions
- It offers access to experienced medical professionals who are familiar with MLD and can help parents, caregivers and medical providers understand available research and treatments so they can be better advocates for the MLD-affected patients