The Tuberous Sclerosis Alliance and The LAM Foundation are co-hosting five Regional TSC & LAM Conferences in 2019!
Focusing on patients and caregivers, conferences will take place in Boston (April 13), St. Louis (June 15), Chicago (September 7), Atlanta (September 21), and Los Angeles (November 2) in 2019.
These one-day conferences will feature local leading researchers and clinicians specializing in TSC and lymphangioleiomyomatosis (LAM), as well as speakers from The ARC, Child Neurology Foundation, and MassMutual discussing transition issues. They will also include networking opportunities to meet other families and individuals from the area. These full-day conferences will offer a Pediatric Track (Track 1), a Transition Track (Track 2), and an Adult Track with sessions important to adults with TSC and LAM (Track 3).
- Research updates, including upcoming clinical studies and trials for TSC and LAM
- Seizure types and treatments (pediatric and adult)
- Tumor growth and treatments
- Behavior and mental health
- Transitioning into adulthood
- LAM
- Genetics
- Quality of life
- Kidneys and angiomyolipomas
Learn more and register for each conference:
Boston, MA: April 13, 2019plus
REGISTER NOW!
Date: April 13, 2019
Time: 11:00 AM–6:00 PM
Location: DoubleTree by Hilton
Boston North Shore
50 Ferncroft Rd.
Danvers, MA 01923
Agenda:
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11:00 AM–12:00 PM
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Check-in/Registration
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12:00 PM–1:15 PM
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Welcome and Opening General Session: Research and Upcoming Clinical Trials
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Brendan Manning, PhD
Elizabeth Thiele, MD, PhD
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1:15 PM–2:15 PM
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Track 1: TSC Pediatric—Seizure Types and Treatments
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Elizabeth Thiele, MD, PhD
Mustafa Sahin, MD, PhD
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Track 2: TSC Transition Age—Medical Care Transition Guidelines and
Toolkit (Child Neurology Society)
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Larry Brown, MD
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Track 3a: LAM Specific General Session
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Souheil El-Chemaly, MD, MPH
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Track 3b: TSC Adult—TAND: Mental Health Issues in Living with TSC as an Adult
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Lawrence Selter, MD
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2:15 PM–2:30 PM
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BREAK
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2:30 PM–3:30 PM
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Track 1: TSC Pediatric—TAND: Aggressive Behavior Management and Behavioral Challenges in Children with TSC
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Peter Davis, MD
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Track 2: TSC Transition Age—Education, Employment and Housing (ARC)
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The ARC Representative
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Track 3a: LAM Specific General Session
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Lisa Henske, MD
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Track 3b: TSC Adult—Seizure Management and Quality of Life Issues
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Elizabeth Thiele, MD, PhD
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3:30 PM–3:45 PM
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BREAK
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3:45 PM–4:45 PM
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Track 1: TSC Pediatric—TAND: Autism Spectrum Disorder, Biomarkers, Therapeutic Options and Clinical Trials
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Mustafa Sahin, MD, PhD
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Track 2: TSC Transition Age—Guardianship and Financial Planning (MassMutual)
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Rich Harwood
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Track 3: TSC Adult/LAM—Kidneys and Angiomyolipomas
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Elahna Paul, MD, PhD
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4:45 PM–5:00 PM
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BREAK
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5:00 PM–6:00 PM
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General Session: Genetics in TSC and LAM
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David Kwiatkowski, MD, PhD
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St. Louis, MO: June 15, 2019plus
REGISTER NOW!
Date: June 15, 2019
Time: 8:30 AM–4:30 PM
Location: Washington University, Farrell Learning and Teaching Center (FLTC)
520 S Euclid Ave
St. Louis, MO 63110
Agenda (subject to change):
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8:30 AM–9:30 AM
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Check-in/Registration
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9:30 AM–10:45 AM
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Welcome and Opening General Session: Research and Upcoming Clinical Trials
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April Cooper, Director of
Community Programs, TS Alliance;
Sue Sherman, MHA, Chief
Executive Officer, The LAM
Foundation; Michael Wong,
MD, PhD; Nishant Gupta, MD
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10:45 AM–11:00 AM
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BREAK
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11:00 AM–12:00 PM
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Track 1: TSC Pediatric—Seizure Types and Treatments
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Laura Jansen, MD, PhD
Himanshu Kaulas, MD
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Track 2: TSC Transition Age—Medical Care Transition Guidelines and
Toolkit (Child Neurology Society)
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Rebecca Schultz, PhD, NP
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Track 3a: LAM Specific General Session
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Chase Hall, MD
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Track 3b: TSC Adult—TAND: Mental Health Issues in Living with TSC as an Adult
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Tanjala Gipson, MD
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12:00 PM–1:00 PM
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LUNCH
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1:00 PM–2:00 PM
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Track 1: TSC Pediatric—TAND: Aggressive Behavior Management and Behavioral Challenges in Children with TSC
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Tanjala Gipson, MD
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Track 2: TSC Transition Age—Education, Employment and Housing (ARC)
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Gabrielle Szarek, Director of Transition Services, St. Louis Arc
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Track 3: LAM/TSC Adult—Kidneys and Angiomyolipomas
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Seth Goldberg, MD
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Track 3b: TSC Adult—Seizure Management and Quality of Life Issues
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Michael Wong, MD, PhD
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2:00 PM–2:15 PM
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BREAK
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2:15 PM–3:15 PM
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Track 1: TSC Pediatric—TAND: Autism Spectrum Disorder, Biomarkers, Therapeutic Options and Clinical Trials
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Tanjala Gipson, MD
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Track 2: TSC Transition Age—Guardianship and Financial Planning (MassMutual)
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Kelly Piacenti
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Track 3a: LAM Specific General Session
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Adrian Shifren, MD
Nishant Gupta, MD
Chase Hall, MD
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3:15 PM–3:30 PM
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BREAK
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3:30 PM–4:30 PM
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General Session: Genetics in TSC and LAM
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Dorothy Katherine Grange, MD
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Chicago, IL: September 7, 2019plus
REGISTER NOW!
Date: September 7, 2019
Time: 8:30 AM–4:30 PM
Location: Health Science Campus
2160 S. First Avenue
Maywood, IL 60153
Agenda (subject to change):
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8:30 AM–9:30 AM
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Check-in/Registration
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9:30 AM–10:45 AM
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Welcome and Opening General Session: Research and Upcoming Clinical Trials
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Steve Roberds, PhD
Frank McCormack, MD
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10:45 AM–11:00 AM
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BREAK
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11:00 AM–12:00 PM
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Track 1: TSC Pediatric—Seizure Types and Treatments
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Akira Yoshii, MD, PhD
Douglas Nordli, MD
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Track 2: TSC Transition Age—Medical Care Transition Guidelines and
Toolkit (Child Neurology Society)
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John Millichap, MD
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Track 3a: LAM Specific General Session
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Dan Dilling, MD
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Track 3b: TSC Adult—TAND: Mental Health Issues in Living with TSC as an Adult
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Sigita Plioplys, MD
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12:00 PM–1:00 PM
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LUNCH
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1:00 PM–2:00 PM
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Track 1: TSC Pediatric—TAND: Aggressive Behavior Management and Behavioral Challenges in Children with TSC
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Sigita Plioplys, MD
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Track 2: TSC Transition Age—Education, Employment and Housing (ARC)
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The Arc Representative
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Track 3a: LAM Specific General Session
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Frank McCormack, MD
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Track 3b: TSC Adult—Seizure Management and Quality of Life Issues
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Saba Ahmed, MD
Patricia Ogden, APN, FNP, NP-C
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2:00 PM–2:15 PM
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BREAK
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2:15 PM–3:15 PM
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Track 1: TSC Pediatric—TAND: Autism Spectrum Disorder, Biomarkers, Therapeutic Options and Clinical Trials
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Sigita Plioplys, MD
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Track 2: TSC Transition Age—Guardianship and Financial Planning (MassMutual)
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MassMutual Representative
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Track 3: TSC Adult/LAM—Kidneys and Angiomyolipomas
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Arlene Chapman, MD
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3:15 PM–3:30 PM
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BREAK
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3:30 PM–4:30 PM
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General Session: Genetics in TSC and LAM
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Daryl Waggoner, MD
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Atlanta, GA: September 21, 2019plus
REGISTER NOW!
Date: September 21, 2019
Time: 8:30 AM–4:30 PM
Location: Emory University
James B. Williams Medical Education Building
100 Woodruff Circle
Atlanta, GA 30322
Agenda (subject to change):
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8:30 AM–9:30 AM
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Check-in/Registration
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9:30 AM–10:45 AM
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Welcome and Opening General Session: Research and Upcoming Clinical Trials
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E. Martina Bebin, MD, MPA
Srihari Veeraraghavan, MD
Nishant Gupta, MD
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10:45 AM–11:00 AM
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BREAK
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11:00 AM–12:00 PM
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Track 1: TSC Pediatric—Seizure Types and Treatments
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E. Martina Bebin, MD, MPA
David Wolf, MD, PhD
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Track 2: TSC Transition Age—Medical Care Transition Guidelines and
Toolkit (Child Neurology Society)
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Anne Tilton, MD
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Track 3a: LAM Specific General Session
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Srihari Veeraraghavan, MD
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Track 3b: TSC Adult—TAND: Mental Health Issues in Living with TSC as an Adult
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TBA
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12:00 PM–1:00 PM
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LUNCH
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1:00 PM–2:00 PM
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Track 1: TSC Pediatric—TAND: Aggressive Behavior Management and Behavioral Challenges in Children with TSC
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TBA
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Track 2: TSC Transition Age—Education, Employment and Housing (ARC)
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The Arc Representative
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Track 3a: LAM Specific General Session
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Nishant Gupta, MD
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Track 3b: TSC Adult—Seizure Management and Quality of Life Issues
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E. Martina Bebin, MD, MPA
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2:00 PM–2:15 PM
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BREAK
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2:15 PM–3:15 PM
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Track 1: TSC Pediatric—TAND: Autism Spectrum Disorder, Biomarkers, Therapeutic Options and Clinical Trials
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TBA
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Track 2: TSC Transition Age—Guardianship and Financial Planning (MassMutual)
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MassMutual Representative
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Track 3: TSC Adult/LAM—Kidneys and Angiomyolipomas
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John Bissler, MD
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3:15 PM–3:30 PM
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BREAK
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3:30 PM–4:30 PM
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General Session: Genetics in TSC and LAM
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Michael Gambello, MD, PhD
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Los Angeles, CA: November 2, 2019plus
REGISTER NOW!
Date: November 2, 2019
Time: 8:30 AM–4:30 PM
Location: TBA
Agenda (subject to change):
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8:30 AM–9:30 AM
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Check-in/Registration
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9:30 AM–10:45 AM
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Welcome and Opening General Session: Research and Upcoming Clinical Trials
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Joyce Wu, MD
Ariss DerHovanessian, MD
Frank McCormack, MD
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10:45 AM–11:00 AM
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BREAK
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11:00 AM–12:00 PM
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Track 1: TSC Pediatric—Seizure Types and Treatments
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Joyce Wu, MD
Lily Tran, MD
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Track 2: TSC Transition Age—Medical Care Transition Guidelines and
Toolkit (Child Neurology Society)
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Rebecca Schultz, PhD, NP
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Track 3a: LAM Specific General Session
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Ariss DerHovanessian, MD
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Track 3b: TSC Adult—TAND: Mental Health Issues in Living with TSC as an Adult
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Andrew Liu, MD
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12:00 PM–1:00 PM
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LUNCH
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1:00 PM–2:00 PM
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Track 1: TSC Pediatric—TAND: Aggressive Behavior Management and Behavioral Challenges in Children with TSC
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Shafali Jeste, MD
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Track 2: TSC Transition Age—Education, Employment and Housing (ARC)
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The Arc Representative
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Track 3a: LAM Specific General Session
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Frank McCormack, MD
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Track 3b: TSC Adult—Seizure Management and Quality of Life Issues
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Don Phillips, MD, MPH
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2:00 PM–2:15 PM
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BREAK
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2:15 PM–3:15 PM
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Track 1: TSC Pediatric—TAND: Autism Spectrum Disorder, Biomarkers, Therapeutic Options and Clinical Trials
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Shafali Jeste, MD
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Track 2: TSC Transition Age—Guardianship and Financial Planning (MassMutual)
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MassMutual Representative
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Track 3: TSC Adult/LAM—Kidneys and Angiomyolipomas
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Carl Schulze, MD
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3:15 PM–3:30 PM
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BREAK
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3:30 PM–4:30 PM
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General Session: Genetics in TSC and LAM
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Julian Martinez, MD, PhD
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Learn more about TSC and LAM:
About Tuberous Sclerosis Complex (TSC)plus
Tuberous sclerosis complex (TSC) is a genetic disorder that causes non-malignant tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs. The aspects of TSC that most strongly impact quality of life are generally associated with the brain: seizures, developmental delay, intellectual disability and autism. Approximately 85 percent of individuals experience seizures during their lifetime, and about one-third of these manifest as infantile spasms, a devastating form of epilepsy occurring in early childhood. Autism occurs in approximately 50 percent of individuals with TSC, and other behavioral and psychiatric symptoms—such as aggression and anxiety—are quite common and are now known as TSC-Associated Neuropsychiatric Disorders (TAND). The incidence and severity of the various aspects of TSC can vary widely among individuals, even between identical twins.
At least two children born each day will have tuberous sclerosis complex. Current estimates place tuberous sclerosis complex-affected births at one in 6,000. Nearly 1 million people worldwide are estimated to have TSC, with approximately 50,000 in the United States. Many cases may remain undiagnosed for years or decades due to the relative obscurity of the disease and the mild form symptoms may take in some people.
In 2000-2001, three studies reported that between 26% and 39% of women with a definite diagnosis of TSC have evidence of LAM (Costello et al., 2000; Franz et al., 2001; Moss et al., 2001). Several subsequent studies suggested the frequency of lung involvement in adult women with TSC may be even higher, ranging from 42% to 49% (Muzykewicz et al, 2009; Adriaensen et al, 2011; Cudzilo et al., 2013). Importantly, in many of these women the disease does not cause significant respiratory symptoms.
Because of the wide variety of symptoms associated with this disease, TSC can be considered a “linchpin” disease since breakthroughs in TSC can lead to breakthroughs in other diseases, including autism, epilepsy and even cancer.
About Lymphangioleiomyomatosis (LAM)plus
Lymphangioleiomyomatosis (LAM) is a progressive and often fatal lung disease that typically strikes young women. The average age of diagnosis is 34. LAM is characterized by an abnormal growth of smooth muscle cells in the lungs. These cells invade lung tissues, including the airways, blood and lymph vessels. Although these cells are not considered cancerous, they grow uncontrollably within the lungs. Over time, the cells produce materials that break down tissue causing the formation of cysts. The delicate architecture of the lungs is destroyed and the airflow is blocked, limiting the delivery of oxygen to the rest of the body. Ultimately women with LAM require supplemental oxygen and may face the need for a lung transplant or death.
The prevalence of LAM is difficult to know because it is frequently misdiagnosed as emphysema, bronchitis, allergies or asthma. There are 1,400 known cases of LAM in the United States and estimates that another 15,000 – 30,000 exist worldwide. Women with LAM suffer from shortness of breath, chest pain, fatigue and lung collapses.