“Mom found NF Midwest, she calls them our life ring and for good reason, they saved us in more ways than they or anyone else could imagine. We were no longer alone. They sent us information, talked to us gave us a breath when everyone else seemed to have taken it away. Trust me when I say my NF is much easier with them in my corner. ”
“..we reminded ourselves to not get overwhelmed by the info and just to take it all in stride as much as we can. I think when it’s all new to you, it all sounds so scary. Which is why it was so nice to meet other families with happy kids and adults with NF. ”
“I received both of your packets in the mail yesterday and I wanted to say THANK YOU! The NF packet provided me with so much information I cannot thank you enough. When we got his diagnosis in November we had never even heard of NF so this has all been a bit of a whirlwind for us. Thank you for providing me with the tools to pass along to his teacher and my family! ”
“Thanks for giving me information to guide me in the right direction. I can do this because you have given me the tools to get started. Other websites send me in circles leaving me with more questions than I began with. So once again THANK YOU FOR CARING.” – S.E. Age 29
In-Person Once Again! We’re So Much Better Together!
A day of education for families and individuals affected by neurofibromatosis, a genetic disorder that causes tumors to grow on nerves throughout the body. This event aims to provide a supportive environment for attendees to learn about the latest advances in research, treatment options, and practical resources for managing the condition. Expert speakers, interactive panels and discussion, and networking opportunities, offer a valuable experience for those impacted by neurofibromatosis to connect with others and gain a deeper understanding of this complex disorder.
Join us for an all day iNFo Fair in Naperville, Illinois on Saturday, October 21st. We are still setting all the topics, however expect topics that teach you things you need to know and chances to socialize and discuss!
An approximate agenda with session times will be set a week or so before the event. TOPICS ARE NOT YET COMPLETE!
NF Overview and Update – Learn about NF1, NF2-related schwannomatosis, and schwannomatosis including new diagnostic criteria, new statistics, and new wording! – Carlos Prada, MD; Lurie Children’s Hospital Neurofibromatosis Program
“Where Does it Hurt?” A Conversation on NF, Mental Health, and Well-Being – Ethan Lester, PhD; Clinical Psychologist; Massachusetts General Hospital
Cutaneous Neurofibromas vs. Plexiform Neurofibromas. What’s the Difference? – Carlos Romo, MD; Neurologist; Johns Hopkins University School of Medicine
Cutaneous Neurofibroma Treatment Options and Research – Mandi Johnson, MBA; Johns Hopkins University School of Medicine
Plexiform Neurofibromas Treatment Options and Research Update – Carlos Romo, MD; Neurologist; Johns Hopkins University School of Medicine
❤ What I Know Now That I Wish I Knew Then: Parenting a Child with NF – Gain from the wisdom of experienced parents of children with NF1. Discover valuable insights on many topics as they share their journey, offering support to fellow parents, and building a knowledgeable community.
❤ Navigating NF: Insights from Patients – Helpful vs. Hurtful Experiences – This conversation is meant to help us all gain valuable insight from real experiences of people navigating the complexities of having NF so that we can do better and understand more.
NF2-RELATED SWN TOPICS
Hearing Preservation in NF2 – Konstantina Stankovic, MD, PhD, FACS; Stanford Ear Institute
NF2 Natural History Study Results – Christina Hayes CRNP, National Institutes of Health
Overview of Treatment Options in NF2-Related Schwannomatosis – Carlos Romo, MD; Neurologist; Johns Hopkins University School of Medicine
❤ What I Know Now That I Wish I Knew Then – Gain from the wisdom of experienced patients and parents of children with NF2/SWN. Discover valuable insights on many topics as they share their journey, offering support to fellow parents, and building a knowledgeable community.
CHRISTINA HAYES, MSN, CRNP
Christi is a family nurse practitioner who has worked with the Surgical Neurology Branch at the National Institutes of Health since 2012. She works with patients with NF2 and other neurosurgical disorders in both inpatient and outpatient settings. She values her role as an associate investigator on the NF2 study and enjoys working with the PI, other investigators, and the multi-disciplinary care team to learn more about NF2 and contribute towards efforts to progress research and improve care.
ETHAN LESTER, PHD
Dr. Ethan Lester is a clinical psychologist at Massachusetts General Hospital, an Assistant Professor at Harvard Medical School, and an affiliated researcher with the Center for Health Outcomes and Interdisciplinary Research. Dr. Lester specializes in behavioral medicine and mental health care for people with neurological illnesses and conducts individual psychotherapy/counseling visits with patients at the hospital. Specific to NF, Dr. Lester was the lead clinician on the Department of Defense Funded Clinical Trial at MGH for adults with NF1, NF2, and Schwannomatosis and is also the creator of the web-platform www.NF-Web.org (click to check it out), funded in part by NF Midwest.
CARLOS PRADA, MD
Dr. Prada finds it an honor to work with children, adults, and families with genetic diseases. His clinical work focuses on improving health for individuals with rare diseases by developing individualized and integrated care across specialties to promote their wellbeing. For 6 years, he co-led the RASopathies program at Cincinnati Children’s Hospital to develop a care-based model on genetic pathways. He has conducted randomized clinical trials of lysosomal storage disorders, neurofibromatosis type 1, RASopathies, mTORopathies, and several natural history studies of genetic disorders in partnership with family groups and foundations.
Dr. Prada joined the faculty at Cincinnati Children’s Hospital Medical Center in 2013. He became director of the RASopathies Program in 2016 and director of the Neurofibromatosis Program in 2020 at Cincinnati Children’s Hospital. In 2021, Dr. Prada joined Lurie Children’s and the Feinberg School of Medicine at Northwestern University as the Division Head of Genetics, Genomics and Metabolism.
CARLOS ROMO, MD
Dr. Romo specializes in the diagnosis and treatment of people with neurofibromatosis, schwannomatosis, and brain tumors. Dr. Romo earned his medical degree from the School of Medicine and Health Sciences at Tecnológico de Monterrey in Mexico and completed his Neurology residency at the University of Arkansas for Medical Sciences, where he served as chief resident. He then completed a Neuro-oncology clinical and research fellowship in a joint program between The Johns Hopkins University and the National Institutes of Health. Dr. Romo additionally trained as a clinical pharmacology fellow at The Johns Hopkins University and completed training on clinical cancer research at the University of Texas MD Anderson Cancer Center. In his research, Dr. Romo studies the natural history and treatments for people with neurofibromatosis. He also studies drug pharmacokinetics and the blood-brain barrier, and investigates better ways to reach tumors in the central nervous system. In addition to patient care and research, Dr. Romo teaches and mentors medical and undergraduate students to help develop a future generation of neurologists.
TINA STANKOVIC, MD, PHD, FACS
Konstantina “Tina” Stankovic, MD, PhD, FACS is the Bertarelli Foundation Professor and Chair of the Department of Otolaryngology – Head & Neck Surgery at Stanford University School of Medicine. She is a Harvard-trained ear and skull-base surgeon and a Massachusetts Institute of Technology-trained auditory neuroscientist. Her clinical focus is in otology and neurotology, and she previously served as Chief of the Division of Otology and Neurotology at Massachusetts Eye and Ear, a teaching hospital of Harvard Medical School. In addition to her clinical and administrative duties, she directs a basic science laboratory focused on improving diagnostics and therapeutics for sensorineural hearing loss. She has initiated and led successful cross departmental, national, and international collaborations to develop and deploy novel molecular diagnostics and therapeutics for hearing loss and otologic diseases in general while educating the next generation of leaders in surgery and science.
A small block of rooms has been reserved at the Naperville Holiday Inn Express for $135 per night. Rooms must be reserved by September 20th to get that rate.
This hotel is within walking distance of the iNFo Fair Venue.
Holiday Inn Express 1837 Centre Point Circle Naperville, IL 60563
Join us for a food and socializing on Friday night, October 20th at the Holiday Inn Express in Naperville. We’ll have more information closer to the event. It will probably start around 6 pm and go to 8 pm.