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Boston Children's Hospital, Cambridge, MA
March 31st - April 1st, 2016
| Day One Thursday, March 31, 2016 | | Time | Topic | Speaker | | 7:30 | Symposium Registration and Continental Breakfast | | 8:30 | Welcome and Clinical Phenotype | Phillip Pearl, MD | Boston Children's | | 9:15 | Historical Timeline of SSADH Deficiency | Mike Gibson, PhD | WSU | | 10:00 | Rapalogue Therapeutics in SSADH Deficiency | Kara Vogel, PhD | WSU | | 10:45 | Networking Break | | 11:00 | SGS Clinical Trial | William Theodore, MD | NINDS | | 11:30 | Building patient-derived neuron models of SSADH | Robin Kleiman, PhD | Boston Children's | | 12:15 | Aldehyde Trap for SSADH Deficiency | David Clark, MD | Aldeyra Therapeutics | | 12:45 | Lunch | | | | 1:45 | Undiagnosed Hereditary Disorders | Keith Hyland, PhD | Medical Neurogenetics | | 2:30 | NINDS Funding Opportunities for Inborn Errors of Metabolism Research | Jill Morris, PhD | NINDS | | 3:15 | Networking Break | | 3:30 | Inborn Errors of Metabolism | Gerard Berry, MD | Boston Children's | | 4:15 | TMS Applications in Metabolic Diseases | John Schreiber, MD | Children's National | | 5:00 | Networking Happy Hour | | | | | | | | | | | | Day Two Friday, April 1, 2016 | | Time | Topic | Speaker | | 7:30 | Symposium Registration and Continental Breakfast | | 8:30 | Welcome | Phillip Pearl, MD | Boston Children's | | 8:35 | Therapeutic Options - Speech Therapy | Marie Coakley,CCC-SLP | Special Therapies, Inc. | | 9:15 | Therapeutic Options - Occupational Therapy | Susan Kratz, OTR, CST | Special Therapies, Inc. | | 10:15 | Networking Break | | 10:30 | Special Needs Trusts and Guardianship Options | David Blake and Carolyn Martello Spaulding | Blake Law Offices | | 11:30 | Power of the Patient - Becoming an Advocate | Stephanie Fischer | Everylife Foundation | | 12:00 | Lunch | | | | | Building a stronger patient association, awards for families that have fundraised, ways to get personally involved, leveraging social media to bring awareness of SSADH, SSADH awareness day, increasing fundraising | | | | 1:00 | NORD and Empowering Patients | Pamela Gavin | NORD | | 1:45 | Patient Centered Drug Development - Bench to Bedside | Irene Dustin | NINDS | | 2:30 | Adjourn Meeting | | | |
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Organized by:
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SSADH Association |
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Invited Speakers:
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Phillip Pearl, MD Boston Children's Kara Vogel, PhD WSU William Theodore, MD NINDS Robin Kleiman, PhD Boston Children's Keith Hyland, PhD Medical Neurogenetics Morris, PhD NINDS Gerard Berry, MD Boston Children's John Schriber, MD Children's National Marie Coakley Speech Therapy Susan Kratz Occupational Therapy David Blake and Carolyn Martello Spaulding Blake Law Offices Stephanie Fischer Everlife Foundation Pamela Gavin NORD Irene Dustin NINDS Cheryl Cahill, RN Boston Children's Hospital
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Deadline for Abstracts:
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Past
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Registration:
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http://www.eventbrite.com/e/ssadh-symposium-a-neurotransmitter-disease-tickets-18134556948
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E-mail:
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ssadhdeficiency@yahoo.com
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