Celebrate Halloween with more than just costumes, candy and trick-or-treating this year! There are many fun Halloween-themed activities you can do with your children to hone their gross motor, fine motor and visual motor skills which they may struggle with as a result of their NF1. Here are a few fun suggestions for activities and iPad apps to keep […]
Month: October 2014
Nicole’s Nook: Age Appropriate Apps for Children 0 – 5 Years
In this month’s blog, I thought that I would take a moment to showcase the technology currently available for younger children (birth to 5 years old). Today’s technology-saturated world has made it difficult to determine how much is too much and how young is too young. For children under 2, the American Academy of Pediatrics […]
SAVE THE DATE: Club NF Goes Ice Skating!
The Washington University NF Center in collaboration with the St. Louis Children’s Hospital Foundation is excited to announce our December 2014 Club NF event – Club NF Goes Ice Skating! We know the holiday season can be a busy time, but hope you are able to join us on December 6 from 10 a.m. – 12:30 p.m. […]
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 […]
Study Reveals Neuronal Dysfunction Pathway in NF1
Over 60% of children with NF1 have learning, attention and behavioral delays, leading researchers to believe that the NF1 gene is a critical regulator of brain nerve cell function. Previous studies designed to determine how the NF1 gene functions in brain cells have yielded conflicting results in both mouse and fruit fly model systems. A […]
Courtney’s Corner: Studying Gait, Balance & Hip Strength in Children with NF1
The kids are back in school, fall sports are in full swing, and Halloween is right around the corner – where does the time go? The last few months have been busy for me because we recently started recruiting patients to participate in a new study. The study was designed to determine whether a relationship […]
UPDATE: Clinical Research Studies at the Washington University NF Center – Fall 2014
Interested in how our current clinical studies are going? NF1 Genome Project (NF1GP) We have obtained 425 blood samples from individuals with NF1 and have already used some of the samples in new studies. These include a study looking at the differences in DNA between people with NF1 who develop brain tumors and people with NF1 who do not […]
Club NF Had a Great Time at FuNFest 2014!
This past Saturday, a group of Washington University NF Center coordinators, St. Louis Children’s Hospital therapists and Club NF families traveled to Gatch Lake near Vandalia, Il to support FuNFest for the second year in a row. The 4th annual FuNFest, a fundraiser held by Amanda and Brian Walk, is a community event which includes games […]
Courtney’s Corner: Evaluating Your Child for Orthotics
As a physical therapist, I spend a lot of time looking at feet. I observe children’s feet during walking, running and jumping activities, as well as when they are sitting. I do this to evaluate their arches, strength and range of motion. In general, children are born with very flat and chubby feet, but by […]