NF Northeast is excited to announce that our Tuesday Takeaways series, a four-part lunch and learn speaker series, is returning in September 2023! These one-hour educational lunch time sessions are geared towards learning about updates and relevant information for our NF community. Please join us for any or all of the following sessions taking place via Zoom one Tuesday of each month September – December at 12pm EST.
Tuesday, September 19th (12pm EST) – Neurofibromatosis Type 1 (NF1) Tumor Early Detection (TED) Study
David Miller, PhD and Katherine Piculell, MPH – The goal of the NF1 TED Study is to determine whether a blood test can detect malignant peripheral nerve sheath tumors (MPNSTs) in participants with Neurofibromatosis Type 1 (NF1) earlier than the current standard of care. In this session, Dr. David Miller and his study coordinator, Katherine Piculell, will introduce NF Northeast members to the NF1 TED Study and provide an overview of this exciting observational clinical research study.
Tuesday, October 17th (12pm EST) – Update on the Role of Hormones in Neurofibromatosis
Rebecca Brown, PhD – Is it true that skin bumps (skin neurofibromas) in neurofibromatosis type 1 (NF1) start growing because of puberty? Does pregnancy cause more bumps to grow? What about hormonal birth control? Is it safe to take gender affirming hormones? These questions do not have easy or direct answers. Tune in to hear NF expert Dr. Rebecca Brown from Mount Sinai Hospital in New York City dissect the evidence (or lack thereof) for how hormones affect tumors in NF1.
Tuesday, November 14th (12pm EST) – The Use of Service Dogs in Neurofibromatosis
Leah Manth, MSW and Dasher Manth, Service Dog Extraordinaire – Join us to learn about the positive impact a service dog can provide for patients and families affected by neurofibromatosis. Have you wondered what type of assistance and comfort a service dog can provide? Or how someone might go about applying for one? Leah will also describe the difference between service, therapy, & emotional support dogs and much more!
Tuesday, December 12th (12pm EST) – Understanding the Impact of NF on Families
Dr. Jennifer Janusz, PsyD – Please join us to learn more about the impact that NF can have on your family. Dr. Janusz will speak to the various ways family relationships can be affected by having a loved one with neurofibromatosis – from parents/partners to sibling relationships.