Since the first NDC symposium on NF, there have been tremendous advancements in the field with respect to genetics, treatment options and patient management. The symposium began with an overview of Neurofibromatosis Type 1 (NF1) clinical diagnosis (Bruce Korf, MD, PhD; University of Alabama – Birmingham), NF1 gene structure and function (David Viskochil, MD, PhD; University of Utah), and NF1 genotype-phenotype correlations (Ludwine Messiaen, PhD; University of Alabama – Birmingham). During the second session of the day, the pathogenesis of specific features of NF1 features was highlighted, including optic pathway glioma (David Gutmann, MD, PhD; Washington University), behavior and learning (Maria Acosta, MD; Children’s National Medical Center), plexiform neurofibromas and malignant peripheral nerve sheath tumors (D. Wade Clapp, MD; Indiana University) and bone defects (Florent Elefteriou, PhD; Vanderbilt University). The last session of the day reviewed advances in the treatment of NF1, with presentations from Brigitte Widemann, MD (National Cancer Institute), D. Wade Clapp, MD, and Roger Packer, MD (Children’s National Medical Center).
The 16th annual NDC symposium was well attended by child neurologists from all over the world, and served to showcase the talented physicians and scientists who have dedicated themselves to the treatment and care of children with NF1.
YOU’RE INVITED: Club NF Yoga & Swimming
Join us at our next Club NF event on Saturday, August 6, at The Lodge Des Peres for a morning of yoga and swimming! Kids will enjoy a yoga class led by Courtney Metzinger, OTD, MFA, OTR/L, an occupational therapist from St. Louis Children’s Hospital. Your child with NF1 may benefit from attending this event in the following ways:
Motor skill development, including running, jumping and balancing to strengthen
underdeveloped muscles and improve cardiovascular function
Improved executive function skills such as following multiple-step directions and
planning projects correlate to finishing homework or school projects
Social skill advancement, which will enable your child to speak in a group, initiate conversation, make eye contact and maintain a conversation
Parents will attend a presentation led by Elizabeth Fox, the Regional Coordinator from MPACT (Missouri Parents Act), to discuss “Understanding the Evaluation Process” as it relates to special education services. Lunch will be served to those who RSVP. Bring your swimming gear (including sunscreen and towels) as guests will be provided with day passes to the indoor and outdoor pools at The Lodge.
Club NFis the Washington University NF Center’s free, play-based therapy program for school-aged children (K – 8thgrade) with NF1 and their families. St. Louis Children’s Hospital therapists work directly with the children in small groups to accomplish a variety of physical therapy, occupational therapy, and speech and language therapy goals in a real life, social setting. By strengthening underdeveloped skills alongside siblings and peers, these children are set up for future success in the home, classroom and community. The events are held six Saturday mornings a year at various locations and businesses in the St. Louis area, offering a variety of activities throughout the calendar year to meet the needs of all families affected by NF1. This event is made possible by generous funding from the St. Louis Children’s Hospital Foundation,
Recent research in the Gutmann Laboratory that is bringing us one step closer to being able to individually tailor how we monitor and treat people with NF1.
Beat NF, the NF Center’s music-motor therapy program for toddlers with NF1, received national recognition in JazzTimes.
If you haven’t already, be sure to also take a look at our previous issues of the quarterly newsletter for additional NF-related research updates and patient spotlights!
NF Center Forms New Collaboration with Stanford Neuro Oncologist
The Washington University NF Center had a special visitor in April. Cynthia J. Campen, MD, Pediatric Neuro Oncologist and Clinical Assistant Professor of Neurology and Neurological Sciences at Stanford University, traveled to St. Louis to visit Dr. David H. Gutmann and his team of NF specialists, with the goal of learning about our approach to providing exceptional care through groundbreaking research.
Dr. Campen will be opening Stanford’s first NF Center and is focused on bringing the best care to those affected by NF1 in her area. She has chosen the Washington University NF Center as a model
for offering the most comprehensive and evidence-based care to her pediatric patients. Over the course of three days, Dr. Campen met with NF Center collaborators spanning a wide variety of disciplines, spent a day in our clinic at St. Louis Children’s Hospital, and spoke with key NF Center staff members to learn about our research studies, multidisciplinary patient care model and complementary care programs.
By introducing Dr. Campen to the Washington University NF Center’s network of specialists, we have opened the door for future collaborations between the two medical campuses. Given the prevalence of NF1 (1:2,500 people affected) and paucity of centers specializing in the care of individuals with NF1, there is a significant need for academic institutions to form strong working relationships in order to accelerate the pace of scientific discovery and identify more effective treatments for this common genetic condition. We look forward to continuing to work with Dr. Campen and her team at Stanford.
From left to right: Courtney M. Dunn, PT, DPT, Cynthia J. Campen, MD, David H. Gutmann, MD, PhD, and Jessica Heuring, BSN, RN, in the Washington University NF Center Clinic at St. Louis Children’s Hospital.
HEC-TV Innovations: Features Washington University NF Center
It was months in the making, with film crews set up in the research laboratory, at our clinical program at St. Louis Children’s Hospital and even at our jazz music-motor therapy program, Beat NF. The HEC-TV associates have been hard at work, recording candid interviews and capturing meaningful moments among the Washington University NF Center physicians, therapists, researchers, patients and their families. The outcome: an in-depth look at the multidisciplinary team approach we take to treating Neurofibromatosis type 1 (NF1), the life-changing relationships we form with our patients and the groundbreaking research which makes it all possible.
Cordell Whitlock of HEC-TV approached Dr. David H. Gutmann, MD, PhD, Director of the Washington University Neurofibromatosis (NF) Center, back in May 2014 with his idea to feature our unique and innovative approach to treating NF1, the most common disorder most people have never even heard of. Dr. Gutmann jumped at the chance to bring awareness about this life-altering condition to the public and highlight the struggles and triumphs experienced by families who are affected by it. I think I can speak for everyone here at the Washington University NF Center when I say we are grateful to Cordell and the HEC-TV team for putting together such an incredible piece, and we are so thankful to have the opportunity to make such a positive difference in the lives of our patients every day.
Click here to view the feature, and learn more about how the Washington University NF Center is delivering exceptional care through groundbreaking research.
– Written by Courtney L Monroe, Washington University NF Center Clinical Research Assistant II
Back to School: Communicating with Your School
The 2014 – 2015 school year is upon us!
NF1 is the most common disorder you’ve probably never heard of–that is what we tell people the first time they learn about NF1. Because NF1 is not a commonly known disorder, it is likely that the teachers and school administrators at your school also have not heard about it. In these cases, it can be challenging for both parents and children to receive the supports they need in order to make the school year run smoothly. Here are some tips on how to communicate effectively with your school in order to help your child have a successful year.
The more you can educate teachers and administrators about what NF1 is, the better equipped they will be to handle any issues your child may encounter. We provide a range of educational brochures covering features of NF1 from birth through adulthood. We highly recommend that families share these pamphlets with their teachers and administrators as a way to introduce them to NF1. Feel free to download and print them out or to email them.
Know Your Rights
The public school system is required to provide developmental screening to any family who requests it. Developmental screening is necessary if you want your child to receive services such as speech therapy or preferential seating in the school setting. Sometimes the school will say a child does not qualify for therapy services because the screen conducted did not reveal any significant delays. In the event that your school says your child does not qualify for services, you have the right to file a formal complaint with the Missouri Department of Special Education (phone number 573.751.4212) to pursue further testing. To learn more, please read our handout.
Know Your Goals
Take time to work with your child and his or her teachers and administrators to make it clear what your goals for your child are. Having clear goals will help educators guide your child throughout the year. In the case that your child has an Individualized Education Plan (IEP), your child’s team should schedule regular meetings to ensure that goals are being set and met on a regular basis.
Empowering Parents to Detect Potential Delays in their Children with NF1
Children with NF1 commonly experience a range of developmental delays that can negatively impact their daily lives. Early detection and treatment of these delays provides children with NF1 their best chances of success.
In order to help families detect potential delays as early as possible, we have created child development checklists of expected developmental milestones for children between the ages of 6 months and 6 years. Families can easily track the developmental progress of their children.
If you notice your child has not reached a milestone by the expected age, please notify your child’s pediatrician or NF Specialist in order to implement an appropriate care plan.
Washington University NF Center Featured in Innovate
The Washington University NF Center was recently featured as the cover story in the Washington University publication Innovate.
NeuroDay is an annual expo featuring free hands-on activities focused on learning about the brain and cutting-edge brain research. Featured at NeuroDay is The Amazing Brain Carnival, developed by brain researchers at Washington University. The Amazing Brain Carnival includes the opportunity to speak with scientists, play brain games and even hold a human brain!
Make sure to stop by the Team NF Booth!
We will be educating people about what NF1 is and what it is like to be a child with NF1. We will have games that challenge balancing skills, fine motor skills and language skills giving people an inside look at some of the developmental delays commonly face by children with NF1.
NeuroDay is a free event and is perfect for all ages so come support us and help us spread NF Awareness!