By St. Louis Children’s Hospital Logan is a 7-year-old who not only loves to be around others but is also just one belt away from a black belt in Taekwondo and enjoys playing Minecraft and Roblox. Three years ago, Logan was diagnosed with NF1. For Logan, his NF included the thickening of the optic nerves […]
Category: Patient Stories
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 […]
Patient Spotlight: Trevor Vail
My little brother Trevor is 13 and has NF1. In fact, so does his dad, Kenny and other members of the family. No one in the family had any idea that they had NF1 until one day when Trevor was around two years old, my mom, Kenny, and Trevor were at a restaurant. A lady […]
Patient Spotlight: Miranda Ehrstein
Miranda Ehrstein was diagnosed with Neurofibromatosis type 1 (NF1) when she was just 18 months old. Now she is an outgoing and enthusiastic 12 year old girl, who loves stuffed animals, Science and swimming, and is determined to never let her NF1 hold her back. Read about Miranda’s journey with NF1, through the eyes of her loving family.
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. 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.
NF Center Patient Receives NF Hope Award
NF Center patient, Elana Loftspring, was awarded the NF Hope Award at the recent NF Hope Concert in Las Vegas on October 23rd. This prestigious award is given to someone in the NF community “who has risen above their NF diagnosis to make a difference for others living with NF.”
Patient Spotlight: Garrett’s NF1
Garrett Dohlke was diagnosed with Neurofibromatosis type 1 (NF1) when he was just 5 years old. Garrett’s family had never heard of NF1 and was devastated. Read about Garrett’s journey with NF1 and how he overcame many of the challenges associated with the condition.
Washington University NF Center Fall 2015 Newsletter
Check out the fall 2015 newsletter (pdf) for some of our most popular research articles, patient stories and details about upcoming events this fall! Some of the highlights in this issue include: Researchers Separate NF1/RAS Function in Brain Stem Cells Patient Spotlight: Molly McNeill Washington University NF Center to Hold Research Symposium Also be sure to take a […]
Patient Spotlight: Molly McNeill
Molly McNeill is eight, and was diagnosed with NF1 four years ago. She was born with several café-a-lait spots, so we began to watch for development of a second NF symptom. Her pediatric ophthalmologist observed Lisch nodules on her irises when Molly was four, and a diagnosis of NF1 (spontaneous mutation) was confirmed by Dr. […]
NF1 Patient Elana Loftspring: Making a Difference
This isn’t the first time we are reporting about the hard work this extraordinary young woman is doing to make a difference in the lives of individuals with NF, and I doubt it will be the last. Several weeks ago, members of the Washington University NF Center had the pleasure of meeting with Elana and […]
Washington University NF Center Patient Attends Grand Rounds
David H. Gutmann, MD, PhD, Director of the Washington University Neurofibromatosis (NF) Center, presented at Neurology Grand Rounds last Friday. During his seminar, he outlined the barriers to the effective management of children with NF1-associated brain tumors. Dr. Gutmann also highlighted the exciting progress being made by his colleagues at the Washington University NF Center, […]
Sharon and Elana Loftspring – Raising NF1 Awareness Together
Washington University NF Center mother and daughter, Sharon and Elana Loftspring, were recently featured in the Congressionally Directed Medical Research Program’s (CDMRP) Neurofibromatosis Research Program booklet. This mother-daughter team is actively involved in raising awareness of NF1 and offering support to other families who have loved ones living with NF1. Read more about this remarkable family’s experience in […]
Washington University NF Center Fall 2014 Newsletter
Hot off the press – check out our fall 2014 newsletter! Inside this issue: Washington University NF Center Family Celebrates Final Day of Chemotherapy Researchers Publish Findings on New Plexiform Neurofibroma Treatment Beat NF: Understanding how Music Therapy Helps Children with NF1 Join us at 2014 fuNFest! And More! Be sure to take a look at our previous newsletters as […]
Washington University NF Center Family Celebrates Final Day of Chemotherapy
Children with NF1 are prone to develop a type of brain tumor that affects the nerve that carries vision from the eyes to the brain, known as an optic pathway glioma (OPG). In some instances, these tumors cause progressive vision loss, and require treatment with chemotherapy.Ally is one of our children with NF1 and a […]
Club NF Swims!
On August 2, 2014, the Washington University NF Center in collaboration with the St. Louis Children’s Hospital Foundation hosted their August 2014 Club NF Event! The program focused on gross motor development and learning organizational skills. Club NF met at the Des Peres Lodge. The morning began with the children working on motor skill development […]
Beat NF – Together!
During the months of May and June, the Washington University NF Center, the St. Louis Children’s Hospital Foundation, Jazz St. Louis and Maryville University Music Therapy Department are partnering together for their second six week session of Beat NF, Beat NF–Together! Like the previous session, Beat NF–Together features songs written by our music therapist that are […]
Club NF Zoo Adventure!
On June 7, 2014, the Washington University NF Center in collaboration with the St. Louis Children’s Hospital Foundation hosted our June 2014 Club NF Event! The program focused on sensory integration, gross motor skills and social skills. Club NF met at the Saint Louis Zoo. The morning began with families meeting a professional zookeeper to learn […]
Washington University NF Center Family Raises NF Awareness
Recently, Peggy Dohkle partnered with The Louvre Salon & Spa in order to raise awareness about NF. The Louvre, which supports up to six local causes annually, was excited to take on the NF Cause. Mrs. Dohlke, who works at the establishment and who regularly attends Club NF events with her family, organized the fundraising […]
Washington University NF Center Family Raises NF Awareness with Run for Eric
Eric Dominguez was two years old when he was diagnosed with NF1. Since that time, his family has become a passionate advocate for NF research. To raise funds for research and to promote awareness about NF1, the Dominguez family created a group called Run for Eric. Bi-annually, the Dominguez family travels to different locations around […]
Club NF Rocks!
On April 5, 2014, the Washington University NF Center in collaboration with the St. Louis Children’s Hospital Foundation hosted their April 2014 Club NF Event! The program focused on building strength, motor planning, coordination and endurance through rock climbing. Club NF met at Climb So iLL in downtown St. Louis, MO. Children had the opportunity to […]