Celebrating the Life of Jeffrey Hanson

It is with a heavy heart that I write these parting words about Jeffrey Hanson. I am so grateful that I had the opportunity to get to know Jeff over these past few years. He was a remarkable young man who channeled the obstacles and challenges he faced with NF1 into amazingly beautiful artwork. He was a delight to be around, always smiling and eager to share his positive outlook on life. From naming his brain tumor “Clod” to creating vibrant and colorful art even when his own vision was limited, Jeff was simply inspirational. Please join me in extending our warmest thoughts and prayers to his family. Thank you for sharing Jeff with us.

— David H. Gutmann, MD, PhD, FAAN, FANA

MEMORIAL FOR JEFFERY HANSON

Message from the Director

It has been a year like no other. As we all have learned to adjust to life during the COVID-19 pandemic, we have also had to grapple with inherent racial inequities in our country. It is not an understatement to say that these times have served as a flashpoint, prompting deep re-examination, extraordinary accommodations, and renewed focus. Over the past year, we have also had to make changes and adaptations. With great sadness, we made the decision to postpone the 2020 Washington University NF Center Research Symposium until it is safe for us all to gather again in person. In the clinic, we are now using telemedicine to care for our families with NF, while in the research laboratories, we have established ways to remain productive through virtual laboratory meetings and streamlined operations.

ADVANCING CLINICAL CARE

On a very positive note, this year witnessed the first Federal Drug Administration (FDA)-approved drug for Neurofibromatosis Type 1 (NF1). Based on promising studies spearheaded by Dr. Brigitte Widemann at the National Cancer Institute, the MEK inhibitor, Selumetinib, is now available to treat children and adults with growing plexiform neurofibromas. In addition, we have seen remarkable progress in our understanding and management of brain tumors in people with NF1. Dr. Jasia Mahdi recently published a study on brain tumors in children with NF1 arising in locations other than the optic pathway, forming the foundations for future studies to develop practice care guidelines for these tumors. As a part of a larger international team, we also established new recommendations for the management of brain tumors in children and adults with NF1, as well as worked with the World Health Organization and National Institutes of Neurological Disorders and Stroke to update their resources on Neurofibromatosis. These advances are important for our families whose children with brain tumors are cared for by Dr. Nicole Brossier, our pediatric neuro-oncologist specializing in the treatment of children with NF1-associated brain tumors.

ADVANCING NF RESEARCH

In the laboratory, we celebrated the graduation of two star PhD students, Michelle Wegscheid and Xiaofan (Gary) Guo. Dr. Wegscheid is currently completing her medical training at the Washington University School of Medicine, and hopes to become a neurosurgeon-neuroscientist. In her most recent publication, Michelle used human induced pluripotent stem cells to demonstrate that different NF1 mutations create different defects in human mini-brain development. Dr. Guo is now a Neurology resident at Loma Linda University in California. Gary’s major project was also published this spring, in which he found that Nf1 optic glioma growth in mice is controlled by interactions between nerves and immune system cells, suggesting potential future avenues for brain tumor treatments. In addition, researchers in the NF Center identified new mutations in high-grade gliomas (Dr. Wing Wong) and malignant peripheral nerve sheath tumors (Dr. Angela Hirbe).We have also been fortunate to attract several new members to our research team, including Kelly Hartigan (future MD-PhD trainee), Olivia Cobb (staff bioinformatician), Dr. Alex Chen (new postdoctoral fellow), Alice Bewley (bioinformatics student), and Ji-Kang Chen (visiting scientist).

RAISING NF AWARENESS

Using a combination of in-person and virtual tours, visitors to the NF Center learned how laboratory studies have advanced our understanding of the health problems affecting children and adults with NF. Furthermore, the NF Center has been able to pivot and transition all of its Complementary Care programs to a virtual format. Whether providing our toddler’s with a virtual Beat NF program, participating in a virtual Club NF session, or continuing our Teen NF program via Zoom meetings; we continue to provide free, high-quality therapy programs to our NF families during these uncertain times.

Sincerely,

David H. Gutmann, MD, PhD, FAAN, FANA
Donald O. Schnuck Family Professor
Director, Washington University NF Center
Vice Chair for Research Affairs, Neurology

NF Center Complementary Care Programs Go Virtual

At the Washington University NF Center, we believe in the value of extending medical care for our families beyond the walls of the clinic. As such, we have pioneered several successful therapy programs, including Beat NF, Club NF and Teen NF.

The COVID-19 pandemic has challenged our team to find creative ways to offer these essential therapy programs in a safe manner. To overcome these obstacles, we have transitioned all therapy programs to a virtual format via Zoom.

Our entire Beat NF program was reimagined this spring, and now provides quality musical programming and therapy in a Zoom format. Prior to each live session, video recordings were made of each song introducing the weekly instrument and highlighted musician. Each of the five weekly sessions were performed live, with our music therapist leading participants in video recordings, while our physical therapist guided children through the weekly gross motor skill. After each session, participants were emailed their weekly “homework”, representing skills learned in the session, to continue practicing at home. We look forward to continuing this virtual program for the spring 2021 season.

Club NF participants are still be able to enjoy meaningful and rewarding events virtually, while our skilled physical therapists work with each child to improve gross motor, fine motor and/or social skills. At our first Virtual Club NF event in October, children were able to visit a working farm from the safety of their own living room. The NF Center Coordinator and our team physical therapist interacted with the animals and provided education about the farm (social/emotional therapy). In addition, children were led through a corn maze (social therapy), and then worked on craftwork (fine motor/executive function therapy). All Club NF participants had a wonderful time! Stay tuned as more events are announced.

Teen NF was also successfully transitioned to a virtual Zoom format. Participants were able to join with the NF Center Coordinator and Teen NF psychologist, Dr. Kimberly Sirl, for six bi-weekly sessions. These sessions included four meetings with group format interactions with Dr. Sirl to build confidence, work on social skills and foster leadership skill development, followed by two “Life Skills” classes led by an educational specialist from the Saint Louis Science Center. Our newly added Life Skills classes focused on “Health and Wellbeing” and “Networking and Developing Your Brand”. We are looking forward to providing the same 6-session, bi-weekly format for our spring 2021 session.

If you any questions about our programs or would like to attend one of our future events, please contact our NF Center Coordinator: Jennifer Traber, jtraber@wustl.edu

JSL Awarded an Arts and Healing Initiative Grant

Jazz St. Louis is pleased to announce that the Beat NF program, a jazz-music motor therapy program, has been awarded an Arts and Healing Initiative Grant from the Arts and Education Council (A&E). This grant is part of a new effort developed with the Missouri Foundation for Health to increase the capacity for the arts to improve the quality of life for the people throughout our region.

Cynthia A. Prost, A&E President and CEO said it best, “We believe the arts have a critical role in improving an individual’s health and social well-being.” We know this to be true, and we have deep gratitude for our relationship with Dr. David Gutmann and Jennifer Traber at the NF Center.

NF Center 2020 Annual Report Published

Check out the NF Center 2020 Annual Report (pdf) to read a message from the Director, learn more about groundbreaking research in the Gutmann Laboratory, and read about a new therapy treatment for children with NF1.

Additionally, learn about:

  • Support beyond the clinic
  • Research grants awarded to the NF Center team

If you haven’t already done so, be sure to also take a look at our previous issues of the NF Center newsletter for additional NF-related research updates and patient spotlights!

 

 

Beat NF Highlighted During the Jazz St. Louis 25th Anniversary Celebration

On October 2, 2020, Jazz St. Louis celebrated their 25th Anniversary with a virtual party broadcast live on YouTube. The event featured a preshow performance by JazzU students, performances and birthday messages from jazz artists across the country, and an after party concert with Denise Thimes. The event also included stories from patrons, partners, and parents whose children participate in the many community programs offered by Jazz St. Louis. One of the programs highlighted that night was the Washington University NF Center Beat NF program, a jazz music-motor therapy program for toddlers with NF1. See the link below to view this heartfelt Beat NF parent testimonial.

 

Dr. Morris Named Section Head of Pediatric General Neurology

We are delighted to announce that Dr. Stephanie M. Morris has been named Section Head of Pediatric General Neurology at the Washington University School of Medicine. In her newly appointed position, Dr. Morris will oversee clinical operations for pediatric general neurology. During the past several years, she has been caring for children and young adults with NF as co-Director of the NF Clinical Program at St. Louis Children’s Hospital, and has extended her practice into the pediatric general neurology field with her Autism Clinic and as Director of the Fragile X Clinical Program.
Dr. Morris received her pediatric neurology training at Washington University, where she served as the administrative chief resident. Following her residency, she was a clinical research fellow working with Dr. John Constantino (Chief, Child Psychiatry) and Dr. David H. Gutmann (Director, NF Center) to study autism and developmental disabilities in children with NF1.

Teen NF is Going Virtual for Fall 2020!

The Washington University NF Center is excited to announce our Teen NF, Fall 2020, Session will be going virtual! Since Covid-19 tabled our Spring 2020 Session, we have focused our energy on adapting our current program into a rewarding virtual format. Instead of our usual in-person meetings, this new format will use Zoom, a virtual conference call program, to provide shorter, and more frequent, sessions. Regardless of the meeting style change, our objective is to maintain the integrity of our session goals by continuing to provide social/life skill instruction, incorporating real-time practice/leadership opportunities, and concluding with fun, inclusive games.

To participate in our Teen NF, Fall 2020, Session, please follow the link below and fill out the schedule survey, and click the RSVP button to send an email RSVP to our NF Center Coordinator. On Aug. 31, we will choose one of the three schedules that fit the majority of the families, and send the final email invitation.

“Our ultimate goal is to continue all of our Complementary Care Programs in a safe and successful manner, during these uncertain times. Through these virtual adaptations we will focus on fully supporting our therapy goals, while continuing to build our NF community connections and forge a strong network of family support.”

– Jennifer Traber, NF Center Coordinator

 

There are a few supplies needed to attend the Teen NF meetings:
– Internet connection
– Laptop with video capabilities, or smart phone with a camera
If you do not have access to these supplies, or have any questions or concerns, please contact Jennifer Traber: jtraber@wustl.edu or 314-362-1244.

UPDATE: NF Clinical Trials – Summer 2020

research2Check out the NF Clinical Trials section of our website, which was recently updated to include current NF-related trials from clinicaltrials.gov. Some new studies that have been added are:

NF1 Clinical Trials:

NF2 Clinical Trials:

If you are interested in participating in an NF Clinical Trial, please be sure to explore your options. Clinical trials are an exciting and important opportunity for people with NF1 and NF2 to make a difference in their own lives as well as the lives of others affected with NF1 and NF2. It is important to note, when you participate in a clinical trial or study, you are:

  • Receiving the most advanced care.
  • Giving to future generations of people living with NF1 and NF2.
  • Helping to change the way we practice medicine.

NF Center 2020, Volume 2 Newsletter Published

Check out the NF Center 2020, Volume 2 newsletter (pdf) to read about new research on NF1 brain tumors and human brain cells, learn about a new therapy treatment for children with NF1, and read updates on patient engagement.

Additionally, learn about:

  • The Advocate of Hope Award honoring Dr. Gutmann
  • Our newest Patient Spotlight article

If you haven’t already done so, be sure to also take a look at our previous issues of the NF Center newsletter for additional NF-related research updates and patient spotlights!