Chief Science Officer for Cure Sanfilippo Foundation
The pandemic has Cure Sanfilippo Foundation embarking on some new advocacy work by Chief Science Officer Cara O’Neill.
Many, many children with significant special needs, especially children with Sanfilippo Syndrome, have not received appropriate education since the shutdown due to the pandemic.
Seeing this, Dr. O’Neill reached out to Dr. Julie Eisengart, a frequent collaborator at the University of Minnesota.
Dr. Eisengart is a neuropsychologist and now leads the neurodevelopmental rare disease center at the University of Minnesota.
O’Neill asked if she and her colleagues could offer insight to the broader community (including educators) about the unique needs of children with Sanfilippo Syndrome and other disorders and the impact/inappropriateness of “virtual” learning.
The goal is to collaborate to publish a paper or opinion piece that can be used by parents as a tool to further educate their school systems and advocate for their child to be offered an appropriate education.
O’Neill has also reached out to the National MPS Society to discuss this issue, which is greatly affecting our community, and to collaborate on this important issue.
“This paper and advocacy could benefit some of the other forms of MPS that have a significant impact on neurocognition,” said O’Neill. “There are serious inequities that are occurring in terms of the educational system right now for severely disabled children. We are working to help amplify their voices.”
Everyone is invited to share how their child’s education needs have been impacted during COVID, as well as experiences in your special needs child receiving education services. Send your experiences to Contact@CureSanfilippoFoundation.org.