Cure Sanfilippo Foundation Aims to Educate on Remote Learning for Special Needs Children

Cure Sanfilippo Foundation Aims to Educate on Remote Learning for Special Needs Children
0
(0)

A new initiative led by the Cure Sanfilippo Foundation is seeking to provide more insight on the impact of remote learning on children with Sanfilippo syndrome and other developmental disorders.

The advocacy effort is being spearheaded by the organization’s chief science officer and co-founder, Cara O’Neill. The goal is to alert school systems of the need for appropriate education during the COVID-19 pandemic for special needs children.

As part of the effort, parents of children with Sanfilippo or other disorders are asked to share how their child’s education needs have been affected since the start of COVID-19. Contributions can be emailed to [email protected].

COVID-19 was declared a pandemic in March by the World Health Organization. Since then, due to social distancing efforts and school shutdowns, many children who have special needs are being educated online at home, which may not be suitable for them.

“Many, many children with special needs, especially children with Sanfilippo syndrome, have not received appropriate education since the shutdown due to the pandemic,” the foundation states in a post on its webpage.

To look into this issue, O’Neill contacted Julie Eisengart, PhD, a neuropsychologist and frequent collaborator with the foundation, who now leads the Center for Neurobehavioral Development at the University of Minnesota.

Eisengart and colleagues are asked to provide insight to educators and the broader community about the unique needs of children with Sanfilippo and other disorders, and the impact of virtual learning. O’Neill has also asked the National MPS Society to publicly discuss the issue and to collaborate with the foundation on its effort.

The goal is to produce a report or opinion piece that parents can use to make their school system aware of the educational needs of these children, and to advocate on their youngster’s behalf.

“This paper and advocacy could benefit some of the other forms of MPS that have a significant impact on neurocognition,” O’Neill said in the announcement. “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.”

Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
Total Posts: 4
Ana holds a PhD in Immunology from the University of Lisbon and worked as a postdoctoral researcher at Instituto de Medicina Molecular (iMM) in Lisbon, Portugal. She graduated with a BSc in Genetics from the University of Newcastle and received a Masters in Biomolecular Archaeology from the University of Manchester, England. After leaving the lab to pursue a career in Science Communication, she served as the Director of Science Communication at iMM.
×
Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
Latest Posts
  • World Sanfilippo Awareness Day
  • remote learning
  • feeding tubes for children

How useful was this post?

Click on a star to rate it!

Average rating 0 / 5. Vote count: 0

No votes so far! Be the first to rate this post.

As you found this post useful...

Follow us on social media!

We are sorry that this post was not useful for you!

Let us improve this post!

Tell us how we can improve this post?