Cure Sanfilippo Foundation has launched a 10-minute podcast, “A Close Look At Sanfilippo,” to share updates and important information with partner families, donors and supporters, researchers and clinicians, and industry partners in a way they can listen to at their convenience.
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.
In the first episode Glenn O’Neill, president and co-founder of Cure Sanfilippo Foundation, talks about:
- How the Foundation’s application a Chan Zuckerberg Initiative Rare As One grant, if selected, could accelerate several global key research and collaboration projects;
- How use of biomarkers to approve a new Alzheimer’s drug could open doors for Sanfilippo and other degenerative diseases that can’t wait for “just perfect” options;
- How families of children with Sanfilippo sharing their medical records can accelerate scientists’ development of trials and treatments;
- The many ways people are fundraising and supporting the Foundation, enabling it to continue its mission to find a treatment or cure; and
- An update on the Anakinra clinical trial’s initial indicators and what comes next.
An archive of episode is available.
Thoughts and feedback on this first episode and what you’d like to hear about in future ones are welcome. Reach out to Contact@CureSanfilippoFoundation.org.