ADNP Family Conference 2019
ADNP Syndrome Family Conference 2019 HIGHLIGHTS
The first ever ADNP Kids Research Foundation “ADNP Syndrome Family Conference and Scientific Symposium" was held on November 3, 2019 at the UCLA campus in Los Angeles California.
We had close to 100 attendees, with some coming as far away as Brazil, the UK and Dubai.
Additionally, we were able to Facebook live broadcast the entire conference so other families were able to watch online.
This event was made possible by our 4 sponsors: Prevention Genetics, GeneDx, The Summer Neuro-peptide Conference Group and the Diana Sermone Trust.
Speakers and Academia:
· Sandra Bedrosian-Sermone, Founder/President, ADNP Kids Research Foundation.
· Professor. Illana Gozes, Tel Aviv University and Coronis Neurosciences.
· Dr. Alex Kolevzon, Mount Sinai Seaver Autism Center.
· Dr. Anne Arnett, Bernier Lab, University of Washington.
· Genie Egerton-Warburton, Vice President, ADNP Kids Research Foundation
· Dr. Matt Davis, Medical and Scientific Advisory Board Chair.
Sandra Sermone: Opening welcome, history of the ADNP Kids Research Foundation, current foundation work and programs and a summary of research to date. Announcement of NIH/NCATS support of the Mount Sinai study on CP201 and hopeful second drug candidate Ketamine for possible treatment of ADNP Syndrome.
Professor Illana Gozes: History of ADNP from discovery to drug trail, leading up to CP201 and Coronis Neurosciences projects in the US and abroad
Dr. Alex Kolevzon: Current study update and information on biomarker. Drug trail outcome measures and importance of the drug trail for both CP201 and Ketamine.
Dr. Anna Arnett: History of the study of ADNP at the TIGER study and the phenotype research of autism in ADNP Syndrome.
Genie Egerton-Warburton: Closing remarks and importance of spreading awareness and the need for support to fund raise for these amazing projects.
*Special THANK YOU to Keith Chanon for spearheading our new parent lead committee idea and to Miranda Castaneda for all of her help with the Social Media accounts this year.
IF YOU ARE INTERESTED IN VOLUNTEERING IN JOINING A PARENT COMMITTEE TO BRING HELP AND INFORMATION TO PARENTS, RAISE AWARENESS OR HELP WITH FUNDRAISING PLEASE SIGN UP BELOW.
LIVE FACEBOOK RECORDINGS:
HIGHLIGHTS OF DRUG TRIAL ANNOUNCEMENTS
https://www.facebook.com/ADNPFoundation/videos/659390934586956/
FULL FAMILY CONFERENCE 1ST HALF (FOUNDATION AND RESEARCHERS)
https://www.facebook.com/ADNPFoundation/videos/2525091987610190/
FULL FAMILY CONFERENCE 2nd HALF (SYMPOSIUM WITH RESEARCHERS)
(please excuse the delays in the start, you can move forward to the beginning once you open)
https://www.facebook.com/ADNPFoundation/videos/890263334702778/
Currently the videos have not been updated to YouTube, we hope to have them up soon.
The first ever ADNP Kids Research Foundation “ADNP Syndrome Family Conference and Scientific Symposium" was held on November 3, 2019 at the UCLA campus in Los Angeles California.
We had close to 100 attendees, with some coming as far away as Brazil, the UK and Dubai.
Additionally, we were able to Facebook live broadcast the entire conference so other families were able to watch online.
This event was made possible by our 4 sponsors: Prevention Genetics, GeneDx, The Summer Neuro-peptide Conference Group and the Diana Sermone Trust.
Speakers and Academia:
· Sandra Bedrosian-Sermone, Founder/President, ADNP Kids Research Foundation.
· Professor. Illana Gozes, Tel Aviv University and Coronis Neurosciences.
· Dr. Alex Kolevzon, Mount Sinai Seaver Autism Center.
· Dr. Anne Arnett, Bernier Lab, University of Washington.
· Genie Egerton-Warburton, Vice President, ADNP Kids Research Foundation
· Dr. Matt Davis, Medical and Scientific Advisory Board Chair.
Sandra Sermone: Opening welcome, history of the ADNP Kids Research Foundation, current foundation work and programs and a summary of research to date. Announcement of NIH/NCATS support of the Mount Sinai study on CP201 and hopeful second drug candidate Ketamine for possible treatment of ADNP Syndrome.
Professor Illana Gozes: History of ADNP from discovery to drug trail, leading up to CP201 and Coronis Neurosciences projects in the US and abroad
Dr. Alex Kolevzon: Current study update and information on biomarker. Drug trail outcome measures and importance of the drug trail for both CP201 and Ketamine.
Dr. Anna Arnett: History of the study of ADNP at the TIGER study and the phenotype research of autism in ADNP Syndrome.
Genie Egerton-Warburton: Closing remarks and importance of spreading awareness and the need for support to fund raise for these amazing projects.
*Special THANK YOU to Keith Chanon for spearheading our new parent lead committee idea and to Miranda Castaneda for all of her help with the Social Media accounts this year.
IF YOU ARE INTERESTED IN VOLUNTEERING IN JOINING A PARENT COMMITTEE TO BRING HELP AND INFORMATION TO PARENTS, RAISE AWARENESS OR HELP WITH FUNDRAISING PLEASE SIGN UP BELOW.
LIVE FACEBOOK RECORDINGS:
HIGHLIGHTS OF DRUG TRIAL ANNOUNCEMENTS
https://www.facebook.com/ADNPFoundation/videos/659390934586956/
FULL FAMILY CONFERENCE 1ST HALF (FOUNDATION AND RESEARCHERS)
https://www.facebook.com/ADNPFoundation/videos/2525091987610190/
FULL FAMILY CONFERENCE 2nd HALF (SYMPOSIUM WITH RESEARCHERS)
(please excuse the delays in the start, you can move forward to the beginning once you open)
https://www.facebook.com/ADNPFoundation/videos/890263334702778/
Currently the videos have not been updated to YouTube, we hope to have them up soon.
