Join Neurofibromatosis Northeast
The Boston Children's Hospital Multidisciplinary Neurofibromatosis Program, in collaboration with Massachusetts General Hospital, invites you to the 2024 NF Symposium on April 6. Learn about the latest research and clinical trials, connect with other families and ask questions.
Tentative agenda:
Joint session (Folkman Auditorium)
9:00-9:05am Welcome - Dr. Miller & Dr. Ullrich
Highlights
9:05-9:30am Path to a Clinical Trial - Dr. Nicole Ullrich
9:30-9:50am Patient Engagement in Research: Partnering with NF Families to Design Clinical Trials - Dr. Vanessa Merker
9:50–10:30am Service Dogs for the NF Community - The Manth family & Dasher
10:30-10:50am - Break
NF1 topics (Folkman Auditorium)
10:50-11:15am NF1 Clinical Trials - Dr. Viviana Benitez
11:15-11:25am NF1 Liquid Biopsy Observational Trial - Dr. David Miller
11:25-11:45am Common Barriers to Learning - Meredith Chambers, M. Ed
11:45-12:15pm Panel Discussion / General Q+A
NF2-Schwannomatosis topics (Karp Research Building, First floor boardroom)
10:50-11:05am Update of SWN Clinical Trials - Dr. Ina Ly
11:05-11:25am Hearing Amplification and supports - Heather Thompson, PhD CCC-SLP (C) (Zoom)
11:25-11:45am Lab Studies for NF2/SWN - Dr. Andrea McClatchey
11:45-12:15pm Panel Discussion / General Q+A
Ticket Fees: Ticket fees ($15/family) for the symposium are meant to offset the cost of food, parking, AV technology, and CART services (for individuals with hearing impairment). If the cost is prohibitive for any patient or family please contact nfclinic@childrens.harvard.edu.
Parking: Boston Children's Hospital is located at 300 Longwood Avenue, in Boston's Longwood Medical and Academic Area, near the Fenway and the east edge of Brookline. The hospital is at the intersection of Longwood Avenue and Blackfan Street. Boston Children's Hospital's parking garage is located directly opposite the Main Entrance of the hospital. Parking fees will be covered. Please ask for a validation ticket when checking in for the event.
Public Transportation: Green Line "E" train — Longwood Medical Area stop, Green Line "D" Train — Longwood stop
Location: The entrance to the Enders Research Building is to the right when you approach the Main Entrance of the hospital from the circular drive.
Food: Breakfast, beverages and snacks will be available.
Additional information: Due to security requirements, please bring a government issued ID.
Questions?: Please contact us at nfclinic@childrens.harvard.edu
This event is sponsored in part by the Children’s Tumor Foundation (www.CTF.org) and Neurofibromatosis Northeast (www.nfnortheast.org). For more information, please visit their websites.
