NF Center Volume 2, 2016 Newsletter

NLV2Check out the NF Center Volume 2, 2016 newsletter (pdf) to read about the NF Center’s 3rd biennial Research Symposium.

Additionally, learn about:

  • 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!

Nicole’s Nook: App Spotlight

In this month’s blog, I am going to continue showcasing my favorite apps and talk about Co:Writer, a great app for word processing and document creation. It has a long history of being utilized as a PC-based program in the schools, but more recently developers have created a Co:Writer app.

Co:Writer has many accessibility features that make this an easy-to-use, productive app for children with NF1. Some of these features include:

  • WordPredictionWord Prediction: this feature increases typing speed and provides spelling support. The amount of words in your “word bank” can be altered in the app settings, and you can select the type of dictionary you want to use. This can vary from a core vocabulary to an advanced one.
  • Text to Speech: this feature allows you to select whether they want every letter, word or sentence spoken. You can also adjust the rate of speech in which it is read. This option is incredibly useful as it provides auditory feedback on what you have written.
  • Text Features: you can adjust the font style or size to meet your visual needs, and provide contrast with white on a black background, if needed.
  • Topic Dictionaries: these dictionaries enable you to put words related to a specific topic in your “word bank.” There are six example topics to choose from, however, when connected online, you also have the option to use a web-scraped topic dictionary, which searches the web for any topic you choose and moves common words associated with that topic into your “word bank.”

To share work completed in Co:Writer, you can:

  • Email the information, however, it does not attach as a document or PDF but appears in the content of the email.
  • Move it to cloud-based sites such as Google Drive or Dropbox.
  • Post it to Twitter.
  • Print the content.

Co:Writer is available within the iTunes Store for $19.99. For more app recommendations, check out our apps section or view my app page on the St. Louis Children’s Hospital website.

– Nicole Weckherlin, OTR/L, St. Louis Children’s Hospital Occupational Therapist

YOU’RE INVITED: Club NF Paints Pottery

ClubNFpottery

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.

For more information about Club NF events or to register for this upcoming event, please contact Kirsten Brouillet at brouilletk@neuro.wustl.edu.

Club NF is the Washington University NF Center’s free, play-based therapy program for school-aged children (K – 8th grade) 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,