NEWS

The SSADH Conference that was planned for Boston this July has been moved to a virtual format. The event will take place as two half day online presentations on July 9 and 10. Every effort was made to accommodate time zones and though we had to collapse the original agenda by ~50%, we kept the emphasis on topics most pertinent to the Natural History Study.

We continue to plan for an outstanding event and look forward to updates from both the research and clinical professionals.  Our goal is to foster networking opportunities for investigators, clinicians and families alike.

Fortunately, the proceedings from the event will be published as a supplement in the Journal of Child Neurology. Gratefully the supplement will not have the time constraint of the virtual event and will include all speakers originally invited to present for the on-site conference.

Additionally, the conference will be recorded and made available for viewing after the event.  Please be sure to register for the event below.

Conference Overview

Day 1 (July 9, begin 9 am EST)

Session 1: Clinical Updates

Dr. Phillip Pearl/Dr. Melissa DiBacco – SSADHD Natural History Study Updates

Dr. Simon Warfield/Dr. Onur Afacan – Imaging in SSADHD

Dr. Alexander Rotenberg – TMS and Abnormal Innervation in SSADHD

Dr. Kathrin Jeltsch/Dr. Thomas Opladen – Status of SSADHD in the iNTD

15 Minute Break

Session 2: Family Updates

Dr. Kiran Maski – Sleep in SSADHD

Dr. Joseph Gonzalez-Heydrich – OCD in SSADHD

Dr. Phillip Pearl – SUDEP and SSADHD

Day 2 Basic Science Updates and Future Therapeutic Considerations (July 10, begin 9 am EST)

Session 1:

Dr. Jean-Baptiste Roullet/Dr. K Michael Gibson – Metabolics in SSADHD

Dr. Henry Lee – Enzyme Replacement Therapy in SSADHD

Dr. Mustafa Sahin – iPSCs and screening for novel therapeutics for SSADHD

15 Minute Break

Session 2:

Dr. Timothy Yu – Customized Therapy for Rare Diseases

Dr. Ritva Tikkanen – Chaperone Therapy for SSADHD

Dr. Mousumi Bose – Patient/Family reported qualitative outcomes in SSADHD

Question and Answer Session

Registration

To register for the even, click on the link below and then select the orange bar (Select a Date) to register and select both days of the event as they will require different links.
Click here to register for the conference.

After registration, you will receive an email with a link for entrance into the conference.

Additional information will be passed along as it becomes available.  Please let me know if you have any questions by email at: choffmanwi@aol.com