receipt-logo.png
Header-Donate-e1579794194299.png

Podcast Episode 5: Patient Needs & Culture of the Laboratory; 2021 Step Up fundraiser + more

September 22, 2021
ACloseLook-SanfiippoSyndrome-Podcast#4

The Sept. 21, 2021, episode of the Foundation’s “A Close Look at Sanfilippo” podcast spends 10 minutes (and a little more in this episode) diving into five hot topics regarding Sanfilippo Syndrome, a rapidly degenerative disease in children currently with no FDA-approved treatment.

In this episode Glenn O’Neill, president and co-founder of Cure Sanfilippo Foundation, talks about a recent presentation by Foundation Chief Science Officer Cara O’Neill, MD, FAAP, who offered multiple recommendations on how the “culture of the laboratory” can better integrate the true needs of patients, a facet of research that is sorely lacking.

Additionally, Glenn talked about the kickoff of the 2021 Step Up to Cure Sanfilippo steps challenge and how people are using their steps to help children who have a disease that literally robs them of the ability to walk. He also addresses how newborn screening for Sanfilippo would be a “game changer” and the Foundation’s support of a newborn screening pilot in New York.

Glenn also touches on the more than 100 partner families from around the world joining the Foundation and creation of a Professional Advisory Board to allow volunteers to lend their professional expertise to achieving the Foundation’s mission.

Listen to the Podcast

Listen to this episode of “A Close Look at Sanfilippo” at your convenience on Facebook, Instagram, or YouTube.

A Close Look At Sanfilippo” is a regular 10-minute podcast from Cure Sanfilippo Foundation. Each episode spotlights five hot topics in the pursuit of finding a treatment and giving children with Sanfilippo more good days. And how the Foundation is involved and how it accelerates the mission to get an FDA-approved treatment for the children.

Each “A Close Look At Sanfilippo” podcast is a way for partner families, donors and supporters, researchers and clinicians, and industry partners to hear directly from us. One that you can listen to at your convenience.

Related Posts