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Neurofibromatosis Network

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Day of iNFormation

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NF Central Plains is taking their annual symposium to the virtual stage! Featuring speakers and presentations from members and experts in the NF community, this year's line-up is sure to have new information, insight, and ideas for anyone who attends. Our Day of iNFormation is a completely free event; register at the link below and sign up for the additional presentations directly from your confirmation email.

The line-up for the Day of iNFormation is as follows:

 

(9:00 AM - 10:15 AM) Day of iNFormation Welcome - Clinical Challenges and Emerging Advances in the Diagnosis and Management of Plexiform NF and MPNSTs presented by Dr. Angela Hirbe

Our Day of iNFormation begins with an overview of NF1 and how a patient is diagnosed with neurofibromatosis by Dr. Angela Hirbe before she gives an explanation on what plexiform neurofibromas and malignant peripheral nerve-sheath tumors (MPNSTs) are. Dr. Hirbe will review the newly approved drugs for plexiform neurofibromas, as well as research geared at early diagnosis of cancer in patients with NF1 and novel treatments for MPNSTs.

Dr. Angela Hirbe is a graduate of the Washington University M.D. Ph.D. program in St. Louis and completed her residency in Internal Medicine and fellowship in Oncology as part of the Physician Scientist Training Program. Her post-doctoral work was performed in the laboratory of Dr. David Gutmann. Dr. Hirbe is currently an Assistant Professor in the Division of Medical Oncology at Washington University and heads her own laboratory. She also treats patients with sarcoma and has a strong clinical interest in the care of patients with NF1-MPNST.

 

(10:30 AM - 11:45 AM) Breakthroughs in NF2 Research and the Use of Service Dogs in NF presented by John and Linda Manth

John and Linda Manth will share their journey with NF2, how they got involved with NF2 BioSolutions and what "advocating for a cure" means in the science community. John and Linda will also share their experience with service dogs, how their service dog, Dasher, has positively impacted their life and the life of Leah, and how they can also be of benefit to the NF community in general.

John and Linda Manth are a power duo from Buffalo, New York. Their daughter, Leah, was diagnosed with NF2 at age 7, and since then, the Manth family has been dedicated to finding meaningful treatments and a cure. John and Linda have been extremely active in the NF community: they have raised awareness, raised funds, sponsored NF2 research studies, advocated in Washington, DC for federal research dollars, and co-authored a booklet entitled “Understanding NF2.” John serves on the board of NF2 Bio-Solutions, NF Northeast, and the NF Network. Linda was instrumental in securing a service dog to assist Leah with her hearing and balance. When they’re not immersed in NF-related activities, Linda works as a Family Nurse Practitioner and John teaches undergraduate courses in Violence, Global Crime and Comparative Criminal Justice.

 

(11:45 AM - 12:45 PM) Pain Management Strategies for Those with NF presented by Dr. Frank Buono

Dr. Buono gives the next presentation on the subject of pain management. He will explain what chronic pain is and how our NF community can cope with their chronic pain, both from a clinical standpoint and from other alternative-based approaches.

Dr. Frank Buono is an Associate Research Scientist in the Psychiatry Department at Yale School of Medicine. He received his masters and Ph.D. in behavior analysis from Southern Illinois University. He completed his postdoctoral appointment in the division of addiction in the Department of Psychiatry at Yale School of Medicine. Dr. Buono’s research has focused on embedding technology into pain management strategies within individuals with a variety of disorders, specifically those with neurofibromatosis.

 

(1:00 PM - 2:00 PM) Clinical Trials from a Pharmaceutical's Perspective presented by Dr. Uche Iloeje

Dr. Iloeje presents information on clinical trials in the world of NF. 

Dr. Uche Iloeje is Vice President for Medical Affairs, Americas, at SpringWorks Therapeutics, a clinical stage biopharmaceutical company. He is a Nigerian born and trained physician who graduated from the University of Nigeria in 1987. He specialized in Internal Medicine at the University of Connecticut, Critical Care Medicine at the University of Pittsburgh, and Epidemiology and Environmental Health at Yale University. Dr. Iloeje has worked in the pharmaceutical industry for two decades, and has co-authored numerous journal articles. Among his responsibilities at SpringWorks is serving as liaison to patient organizations like the NF Network.

 

The final two presentations will occur simultaneously; you may only attend one live, though we encourage you to register for both to receive the webinar recording of whichever you are unable to make it to.

 

(2:15 - 3:30 PM) Electrodessication: The Removal of Large-Volume Tumors and Day of iNFormation closing presented by Dr. Andre Panossian

Dr. Andre Panossian will present his experience with electrodessication and tumor removal. 

Dr. Andre Panossian is a board-certified plastic surgeon specializing in the surgical treatment of patients with neurofibromatosis. His focus developed while serving on the faculty at Children’s Hospital Los Angeles and in conjunction with the Neurofibromatosis Clinic there. One of the most common procedures Dr. Panossian performs for individuals with neurofibromatosis is electrodessication, or the large-volume removal of neurofibromas. He currently collaborates on neurofibromatosis research with UCLA and Johns Hopkins.

 

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(2:15 PM - 3:30 PM) NF Parent Panel, "Everything You Wanted to Know," and Day of iNFormation closing presented by Dr. Keely Fitzgerald

Dr. Keely Fitzgerald will lead the final presentation of the Day of iNFormation, sharing insight and answering your questions during this NF parent panel.

Dr. Keely Fitzgerald has served as the director of the Children’s Mercy Neurofibromatosis Clinic since July 2019. She completed medical school at Des Moines University, and her pediatric neurology residency at the University of Texas Health Science Center in Houston where she spent time focusing on NF.

 

 

We look forward to having you join us! Click here to register.