NF Midwest Extends Funding on Cognitive Studies

Bonnie Klein-Tasman and her graduate student team from the University of Wisconsin. (L to R) Nathanael Schwarz, Natalie Brei, Bonnie Klein-Tasman, Brianna Yund, and Christy Casnar.

NF Midwest has previously funded studies by Dr. Klein-Tasman’s team that has resulted in valuable information on the cognitive abilities of young children with NF1. This research resulted in the publication of four papers and a poster honored at the NF Conference.

This new funding will allow them to follow-up on the psychosocial and cognitive functioning of the children with NF1 that they examined when they were younger. The children are now age 9-13 years. This will provide a broader base of information on how children with NF1 progress cognitively.  It will help to determine if early cognitive signs are accurate predictors of later abilities. This study will also examine the frequency of occurrence of Autism Spectrum Disorder in NF1 and if there are early predictors.

We are very fortunate to have the chance to fund such a study at such a lower dollar amount only because at least one student is doing their dissertation on the subject and has fellowship funding through the University. It’s wonderful to see our up and coming “great thinkers” take up such a passion for NF and to have the opportunity to nurture it.

Question to Dr. Klein-Tasman

Now that you have been learning about the cognitive and behavioral functioning of young children with NF1 for seven years, what would you say are the most important things that parents of a child with NF1 can do for their child?

We are finding that when young children with NF1 show difficulties, they are often quite mild. We hope to learn whether even these mild difficulties help us understand needs for additional support as children get older. Here are some things parents of young children can do to support development:

• Practice fine motor tasks (e.g., drawing, cutting with scissors, stringing beads, gluing). These may be frustrating for your child, and it is tempting to just not ask them to do these tasks, but then they don’t get practice and may fall further behind.
• Work on developing attention span. Spend some time each day doing a task that requires concentration. Get in the habit of doing “work” at a child-sized table. Gradually build up the amount of “table time.” You can even set a timer and set some challenges for your child (e.g., Let’s see if you can work on this puzzle all the way until the timer goes off, and then we can play with bubbles). Make sure to set the beginning expectations at a reasonable level to ensure that your child has success, and then gradually increase expectations.
• Alternate between tasks your child likes and tasks your child is less fond of to develop the ability to stick with tough tasks. Let your child know that you see the effort, and don’t concentrate too much on success. Over time, the tasks will get easier, and learning this persistence and the value of practice will set the stage for learning.