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.
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, firstname.lastname@example.org
Patient Spotlight: Jeffrey Hanson
In viewing the artistic work of Jeffrey Hanson, one may be drawn to the vibrant colors, to the emphasis on texture, or maybe to the accomplishments of the artist himself. Diagnosed with NF1 in childhood, and enduring chemotherapy and radiation for an optic glioma tumor at 12, Jeff Hanson has surely faced his obstacles. He has also, however, created a successful business selling his artwork, and has donated more than $6 million to the Children’s Tumor Foundation and other charities.
Born with café-au-lait spots, Jeff was not formally diagnosed with NF1 until age 6 when his parents, Hal and Julie, noticed problems with his vision. Doctors at Kansas City’s Children’s Mercy Hospital performed an MRI, and discovered an optic glioma tumor in Jeff’s brain, to be named “CLOD” in later years. By age 12, CLOD’s impact on Jeff’s vision became severe, and doctor’s suggested chemotherapy and radiation.
Picnic in Hyannis Port
It was during chemotherapy treatments that Jeff began to paint, first with watercolors on notecards. At the time, Jeff and his parents saw painting as a pastime – Jeff’s artistic ability had yet to be fully expressed. However, friends and family soon took an interest in the notecards, so Jeff started selling them from a sidewalk stand called “Jeff’s Bistro” and donating the proceeds to charity. He has sold over 5,000 cards to date.
Currently, Jeff’s condition is stable. His vision rebounded from about 20/200 to 20/70, and he graduated from High School at Horizon Academy in Kansas City. He now visits the Washington University NF Center for routine visits after his father, Hal, met Dr. Gutmann through a patient advocacy group. He spends most of his time working, creating artwork both for private commissions and for charity auctions.
His signature style is unmistakable, using modeling paste to create a sculpted, three-dimensional feel and bright colors that easily attract the viewer. This technique is not only the most enjoyable for him, but helps him navigate the canvas despite his poor vision, the ridges serving as a tactile guide to the piece. Jeff’s work now hangs in celebrity homes across the world, including that of Sir Elton John, Warren Buffett and John Cena, and he has a consistent backlog of private orders. In fact, he has not caught up to commissions since the spring of 2008. Since then, he has also accumulated a plethora of honors and awards, ranging from the Ronald McDonald House Charities Artist of the year in 2016 to the Small Business Administration’s Young Entrepreneur of the Year in 2012.
Studio June 2020
To all those facing a similar journey to his, Jeff has a few pieces of advice. “Take your gift and go with it. Focus on what you can do, not what you can’t do. Don’t let your CLOD define you.” And, finally, “Every act of kindness helps create kinder communities, more compassionate nations and a better world for all…even one painting at a time.”