Studies confirm the multiple occurrences of various physical, mental, and psycho-social issues associated with Galactosemia in adulthood (Berry et. al 2012). Facebook conversations across the world reflect multiple problems and challenges for adults living with the disorder. Adults are raising questions about finding supportive services, applying for disability benefits, living independently or semi-independently, dealing with anxiety and depression; hoping for practical answers.
We have decided to focus on this topic in the format of a Roundtable discussion. We want to hear first-hand about the challenges adults are facing navigating in the “real world” with the intent on finding answers and/or resources to help.
Speaker Discussion Panel
Existing and developing technologies offer a broad range of approaches to intervention in genetic disease. Options include: dietary restriction or supplementation, small molecule inhibitors or effectors, enzyme replacement, stem cell therapy, organ or tissue transplant, gene editing or therapy, and others. Different approaches may be better suited to different conditions depending on the timing and severity of outcomes, the nature of the genetic defect, and key organs impacted, among other factors. Here the speakers will share their thoughts about the pros and cons of different options for intervention in classic galactosemia.
This session will highlight the following:
How and where to find resources for students experiencing difficulties?
Differences between 504 plans vs. IEPs
Challenges that children with galactosemia may encounter in school
Three disciplines impact your family’s quest to protect your assets and children: Disability Benefits, Financial Planning and Legal considerations