Our friend and CCA Mom, Carolina Sommer will be hosting the annual FGFR Syndromes Collaborative Research Network Conference again this year on March 17 - March 18, 2022. She was gracious enough to share an early version of the agenda with us. Take a look and see if you recognize any familiar names! We, at CCA, do not want you to miss a minute of this virtual conference loaded with new research, personal stories, and the latest interventions for our kids. We are so proud of the Sommers family and their incredible conference sponsored by Regeneron, Everylife, Born A Hero, and Seattle Children's Hospital. Hope you can join them on March 17 and 18th.
FGFR Syndromes Collaborative Research Network Conference March 17th & 18th, 2022 |
March 17, 2022
8:15 am
Orientation to Webex
Brittany Richey
Manager, Administration
Seattle Children’s Research Institute
8:30 am
Introduction
Carolina Sommer
Founder/CEO
Born a Hero Research Foundation
Introductions
8:40 am
Basic Science Introduction (10 minutes of Q&A)
Dr. David Ornitz, M.D., Ph.D.
Alumni Endowed Professor
Developmental, Regenerative and Stem Cell Biology Program
Neurosciences Program
Washington University in Saint Louis
9:05 am
Clinical Science Introduction (10 minutes of Q&A)
Dr. Andrew Wilkie, M.D., Ph.D.
Nuffield Professor of Pathology
Oxford University
9:30 am
Advances in prenatal detection of FGFR conditions (10minues of Q&A)
Jessica Giordano, MS, CGC
Assistant Professor of Genetic Counseling in obgyn
Columbia University
9:55am
Introductions Q&A
Joan Richtsmeier, Ph.D.
Distinguished Professor
Pennsylvania State University
Musculoskeletal, Part 1
10:25 am
Introduction
Delaney Cunha
Pfeiffer Syndrome Advocate
10:30 am
Benefits of my Daughter’s Spine Surgery
Synthiea Kaldi
Parent Advocate
10:40 am
Cellular therapy for Osteogenesis Imperfecta
Dr. Ivo Kalajzic, M.D., Ph.D.
Professor, Director, Center for Regenerative medicine and Skeletal Development
University of Connecticut Health Center
11:05 am
Skeletal Stem and Progenitor Cells Maintain Cranial Suture Patency and Prevent Craniosynostosis
Dr. Natalina Quarto
Senior Scientist
Stanford University School of Medicine
11:30 am
Spine and extremities in FGFR2 related conditions: when and why to worry
Dr. Klane K. White, MD, MSc
Director, Skeletal Health and Dysplasia Program
Medical Director, Orthopedic Research
Seattle Children’s Hospital
Professor, Orthopaedic Surgery and Sports Medicine
University of Washington
11:55 am
Musculoskeletal, Part 1 Q&A
Amy Merrill-Brugger
Assistant Professor of Biomedical Sciences, Herman Ostrow School of Dentistry of USC
Assistant Professor of Biochemistry and Molecular Biology, Keck School of Medicine of USC
12:25am
Break (30 minutes)
Musculoskeletal, Part 2
12:55 pm
Introduction
Ellie Hollingshead
Pfeiffer Syndrome Advocate
1:00 pm
The neurological effects that over 90 surgeries has had on my son and our family
Dawn Brand
Parent Advocate
1:10 pm
Surgeon-Orthodontist partnership in management of FGFR syndromes
Srinivas Susarla, DMD, MD, MPH
Associate Professor, Plastic Surgery
University of Washington School of Medicine
Oral and Maxillofacial Surgery
University of Washington School of Dentistry
Hitesh Kapadia, DDS, PhD
Chief of Craniofacial Orthodontics
Seattle Children's Hospital
Director, Fellowship Training Program in Craniofacial Orthodontics
Assistant Professor, Orthodontics
University of Washington School of Dentistry and Plastic Surgery
University of Washington School of Medicine
1:35 pm
FGFR-driven skeletal dysplasias and approaches to treatment
Dr. Carl Dambkowski, MD
Chief Medical Officer, QED Therapeutics
VP, Clinical Strategy, BridgeBio Pharma
2:00 pm
From bench to bedside: how to develop transformative therapies for patients with rare bone disorders
Dr. Elvire Gouze, Ph.D.
Founder and CEO, Innoskel
2:25 pm
Musculoskeletal, Part 2 Q&A
Amy Merrill-Brugger
Assistant Professor of Biomedical Sciences, Herman Ostrow School of Dentistry of USC
Assistant Professor of Biochemistry and Molecular Biology, Keck School of Medicine of USC
2:50 pm
Advocating for the Rare Disease Community
Dylan Simon
Newborn Screening and Diagnostics Policy Manager
Everylife Foundation for Rare Diseases
3:15 pm
Closing Remarks
3:25 pm
END
March 18. 2022
8:15 am
Orientation to Webex
Brittany Richey
Manager, Administration
Seattle Children’s Research Institute
8:30 am
Welcome
Carolina Sommer
Founder/CEO
Born a Hero Research Foundation
8:40 am
Multidisciplinary Team at Seattle Children’s Hospital (10 minutes of Q&A)
Anne Hing, M.D.
Professor of Pediatrics
Department of Pediatrics
University of Washington
Associate Director, Education and Academic Programs
Craniofacial Center at Seattle Children’s Hospital
Neurological System
9:05 am
Introduction
Avery Cooper
Pfeiffer Syndrome Advocate
9:10 am
Dealing with surgical anxiety
Whitney Hollingshead
Parent Advocate
9:20 am
How Pfeiffer Syndrome Affects the Nervous System
Ioannis Mavridis, MD, PhD, FNYAM
Asst. Professor of Neurosurgery
Head, Department of Neurosurgery, Medical School, Democritus University of Thrace,
University General Hospital of Alexandroupolis, Alexandroupolis, Greece
9: 45 am
Understanding Cognitive, Psychosocial, and Educational outcomes in children with Craniosynostosis
Hoa Schneider, Ph.D.
Pediatric Neuropsychologist
BCH Cleft and Craniofacial Center
Instructor at Harvard Medical School/Boston Children’s Hospital
10:10 am
TBD
Cassandra Aspinall, MSW, LICSW, ACSW
Social Worker
Seattle Children’s Hospital
10:35 am
Best practices for helping an anxious child through surgery and other medical procedures
Cindy Ola, Ph.D.
Acting Assistant Professor
Psychiatry and Behavioral Sciences
University of Washington School of Medicine
11:00 am
Neurological System Q&A
Moderator, TBD
Respiratory System
12:00 pm
Introduction
Elisa Landmann
Pfeiffer Syndrome Advocate
12:05 pm
The Complexities of Life with a Trach: Home Health to Insurance
Falesha Johnson
Parent Advocate
12:15 pm
Incidence and Management of Obstructive Sleep Apnea in FGFR Syndromes
Cory M. Resnick, MD, DMD
Attending Physician, Oral & Maxillofacial Surgery Program
Boston Children’s Hospital
Assistant Professor
Harvard Medical School
12:40 pm
What parents need to know about children with tracheostomies
John Dahl, M.D., Ph.D., M.B.A.
Assistant Professor
University of Washington
Otolaryngology, Head and Neck Surgery
1:05 pm
TBD
Erin Mackintosh, M.D.
UW fellow at the Pediatric Pulmonary Center
Seattle Children’s Hospital
UW instructor of Pediatric Pulmonary and Sleep Medicine.
1:30 pm
Communication Considerations in Patients with FGFR Syndromes
Lauren Beckett, MS, CCC-SLP
Speech-language pathologist, Instructor
Oregon Health and Science University (OSHU)
1:55 pm
Respiratory System Q&A
Moderator TBD
2:25 pm
Final Remarks
2:30 pm
END
Sponsors
Regeneron
Born A Hero Foundation
Everylife Foundation
Seattle Children's Hospital
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