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Boston Children's Hospital and Harvard Medical School, 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 | Phillip Pearl, MD | Boston Children's | | 8:35 | Clinical Phenotype of SSADH Deficiency | Phillip Pearl, MD | Boston Children's | | 9:30 | Rapalogue Therapeutics in SSADH Deficiency | Kara Vogel, PhD | WSU | | 10:30 | Networking Break | | 10:45 | SGS Clinical Trial | William Theodore, MD | NINDS | | 11:30 | Building patient-derived neuron models of SSADH | Robin Kleiman, PhD | Boston Children's | | 12:30 | 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 | Development of NCS-382 for SSADH Deficiency | G. R. Ainslie, PhD | WSU | | 4:45 | TMS Applications in Metabolic Diseases | John Schriber, MD | Children's National | | 5:15 | 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 | | | 9:15 | Therapeutic Options - Occupational Therapy | Susan Kratz | | | 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 | Everlife 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, branding 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 | Networking Break | | 3:00 | Tour of Boston Children's Hospital | Board Buses for tour of Boston Children's | | | Seizure management - at hospital | Cheryl Cahill, RN | Boston Children's | | 5:00 | Return to Hotel | Board Buses to return |
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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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