Check out the NF Center 2016 Volume 3 newsletter (pdf) to read about recent fundraising events held by the families of NF Center Clinical Program patients to support NF awareness and research.
Additionally, learn about:
Research grants awarded to Gutmann Laboratory scientists.
Research studies linking NF1 to Autism Spectrum Disorder (ASD) trait burden.
If you haven’t already done so, be sure to also take a look at our previous issues of the quarterly newsletter for additional NF-related research updates and patient spotlights!
Walk Family’s FuNFest Raises Money for NF Research
On November 11, 2016, Brian and Amanda Walk and their daughters, Jordan and Bella, visited the Washington University NF Center to celebrate another successful fuNFest event.
FuNFest is a family-friendly festival designed to create awareness about NF and to raise funds for NF research. The event includes games, bounce houses, music, a live auction, silent auction bidding, and the infamous Cow Patty Bingo.
This year’s fuNFest raised an impressive $27,574.64, which will fund Gutmann Laboratory research initiatives aimed at developing personalized medicine approaches for people affected by NF. The Washington University NF Center extends its heartfelt gratitude to Amanda and Brain Walk, who worked tirelessly to plan this event.
Our patients and their families are an integral part of our mission to provide exceptional care through groundbreaking research. Because of families like the Walks, we are able to conduct cutting-edge research and provide outstanding complementary care resources.
David H. Gutmann and Gutmann Laboratory researchers with Brian, Amanda, Jordan and Isabella Walk.
Neurobiology of Disease in Children (NDC) Holds NF Symposium
In conjunction with this year’s Child Neurology Society meeting, the Neurobiology of Disease in Children (NDC) held its 16th annual symposium to review advances in pediatric neurologic disease. The topic for the 2016 NDC symposium was Neurofibromatosis (NF), the very same topic discussed at the first NDC symposium held in 2001.
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.
NF Center Heads to FuNFest!
The 6th annual FuNFest was held a month earlier this year. The date was moved up by the hosts, Amanda and Brian Walk, in the hopes of a sunny, fall Saturday afternoon. Their decision was a smart one as the fundraiser went off without a hitch on Saturday, September 10th, 2016, near Gatch Lake in Vandalia, IL. Even thunderstorms for 24 hours before the event couldn’t stop them from moving forward. The Washington University NF Center staff and some local families took “The Big Red Bus” to FuNFest to join in the fun! The NF Center sponsored a wind chime making activity which strengthened fine motor skills while creating a lasting memento of the day. The activity was a big hit among kids of all ages!
FuNFest is a family-friendly festival designed to create awareness about NF1 and to raise funds for NF1 research. The event includes games, bounce houses, music, a live auction, silent auction bidding, and the infamous “Cow Patty Bingo!” All proceeds raised at FuNFest are donated to the St. Louis Children’s Hospital Foundation/Washington University NF Center to fund laboratory research.
NF1 is a common genetic disorder, occurring in about one in every 2,500 births. This complex genetic disorder can affect almost every organ system in the body, causing a predisposition for tumors to grow on nerves in the brain and throughout the body. While there is no cure for NF1, researchers and clinicians are working tirelessly to understand more about the origins of this disorder and solutions for improving life with NF1.
We had a great day with the Walk family, their friends, family and community! We want to thank the Walks for all the effort they put into hosting this well planned and much-anticipated event. And, we especially want to thank them for inviting the Washington University NF Center and our families to join them. Already, we look forward to the seventh annual FuNFest in September of 2017!
YOU’RE INVITED: Club NF Heads to FuNFest!
The Washington University NF Center, in collaboration with the St. Louis Children’s Hospital Foundation, is excited to announce our September 2016 Club NF event – Club NF Goes to FuNFest!
Please join us on Saturday, September 10th, at the Walk Family’s 6th annual FuNFest, which will also include Club NF. FuNFest is an annual fundraiser sponsored by the Walk family at Gatch Lake — near Vandalia, Illinois. FuNFest includes games, bounce houses, face painting, a silent auction and a bake sale, along with the infamous Cow Patty Bingo! Food and drinks are available for purchase.
All proceeds from the event are donated to St. Louis Children’s Hospital Foundation/Washington University NF Center. To help support this exciting event, Club NF will travel to FuNFest.
If your family would like to ride a free charter bus from the Washington University Danforth Campus (leaving campus at 9:30 a.m. and returning to campus at about 5:30 p.m.), please contact Kirsten Brouillet no later than September 8, 2016.
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,
Music-Motor Therapy Program Improving the Lives of Toddlers with NF1
Working on motor skills during a Spring Beat NF class with St. Louis Children’s Hospital Physical Therapist, Courtney Dunn, PT, DPT.
The Washington University NF Center and Jazz St. Louis recently wrapped up another successful Beat NF session. This unique music-motor therapy program utilizes jazz music and motor therapy to help the NF1 preschool population overcome developmental delays commonly seen in this genetic condition. Earlier this summer, twelve toddlers with NF1 attended weekly classes in St. Louis’ Grand Center at The Harold and Dorothy Steward Center for Jazz. To increase jazz music knowledge and awareness, local jazz musicians played live music throughout each 75-minute class while the children engaged in a variety of gross and fine motor movement activities.
After 5 weeks of attending class and working on motor skills at home through weekly homework assignments, many parents reported a greater appreciation for jazz music and improvements in their child’s jumping and balancing skills. Rae Gilliam, mother to Caroline (a Beat NF program participant), shared with us her journey from receiving Caroline’s diagnosis to attending Beat NF, where she and Caroline found comfort in a supportive environment geared toward growth.
Rae Gilliam with daughter Caroline at Beat NF.
“I will never forget the comfort I received during our first visit to the NF Clinic when Dr. Gutmann told me that the Washington University NF Center would adopt our family as we learned of our daughter’s diagnosis. That statement was projected by every staff member’s approach during the rest of our visit. I was nervous, but so grateful to be invited to the Beat NF jazz music-motor therapy program. The whole process of filling out extensive medical history, working through the personal evaluation, and receiving the initial diagnosis can be overwhelming. Not only did our interaction with the Beat NF staff build morale and help comfort our fears of the unknown, there was overwhelming support from fellow families facing similar genetic delays. As a parent, you want the best for your child. At Beat NF, I find solace in seeing that others do, too.
During a typical Beat NF class, our daughter gets the full gamete of developmental support. Jazz music education, physical therapy, social skill development and speech therapy all woven together during the 75 minute class. Songs are built upon and added weekly, so children can master the lyrics and motor movements. While we enjoy jazz, our affection for the music therapy has incited a cross-sectional appreciation for the benefits of music-based physical therapy. We wish we could attend sessions year round!”
Interested in joining us for the fall Beat NF session? Reserve your child’s spot today by emailing the program coordinator, Kirsten Brouillet.
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!
YOU’RE INVITED: Club NF Paints Pottery
Join us for the next Club NF event, Club NF Paints Pottery, on Saturday, June 11, from 9:30 a.m. – noon at Pottery Hollow in Kirkwood, MO. With the help of St. Louis Children’s Hospital physical and occupational therapists, children will enjoy a morning of designing and painting pottery.
Activities like drawing and painting promote development of fine motor (small muscle groups of the body) skills, which are critical for handwriting, shoe-tying and many other daily tasks. In addition, this event will focus on executive function and social skills, both of which are commonly delayed in children with NF1.
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,
YOU’RE INVITED: Spring 2016 Beat NF
Join us for a one-of-a-kind jazz music experience, seamlessly integrated with gross motor and social skill activities. Beat NF, a jazz music-motor therapy program for toddlers and young children (ages 2 – 5 years) with NF1, was developed by a team of St. Louis Children’s Hospital therapists and Jazz St. Louis musicians. Each class focuses on improving gross motor skills often delayed in children with NF1, while also offering a platform to progress language, social and behavioral skills in preparation for kindergarten.
During each class, the children participate in carefully planned activities that aid in further development of the following skills:
Strength, balance and coordination of all muscle groups, under the supervision of a physical therapist
Expressive and receptive language skills to improve communication
Social confidence to encourage group play, taking turns, using manners and building friendships
Exposure to live jazz music and history including learning about famous jazz musicians and the instruments they mastered
Courtney Dunn, PT, DPT, a St. Louis Children’s Hospital physical therapist, will work directly with both parents and children to help facilitate the motor goals of this curriculum-based, enrichment program.
To learn more about how this program can benefit your child and to register for upcoming sessions, please visit our events page.
Check out the NF Center 2016 Volume 3 newsletter (pdf) to read about recent fundraising events held by the families of NF Center Clinical Program patients to support NF awareness and research.
The 6th annual FuNFest was held a month earlier this year. The date was moved up by the hosts, Amanda and Brian Walk, in the hopes of a sunny, fall Saturday afternoon. Their decision was a smart one as the fundraiser went off without a hitch on Saturday, September 10th, 2016, near Gatch Lake in Vandalia, IL. Even thunderstorms for 24 hours before the event couldn’t stop them from moving forward. The Washington University NF Center staff and some local families took “The Big Red Bus” to FuNFest to join in the fun! The NF Center sponsored a wind chime making activity which strengthened fine motor skills while creating a lasting memento of the day. The activity was a big hit among kids of all ages!
Check out the 
