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Vanderbilt University Educational Study Seeking Young People with NF1

Academic underachievement is a common concern voiced by parents of children with NF1. Up to 75% of children diagnosed have poor academic achievement in various subjects, which is much higher than the percentage of children who have learning disabilities in the general population. Reading deficits are a common learning disability among children with NF1.

In a previous research study, researchers explored what type of tutoring program was most beneficial to children and adolescents with NF1. Results from that study suggest they may benefit from a remedial reading program that involves learning the various sounds of letter combinations using a multisensory approach that emphasizes auditory, visual, and tactile processes.

Now, an exciting new research study out of Vanderbilt University builds upon the previous work by investigating outcomes of the reading program when combined with a medication called Lovastatin (Lovastatin is not approved by the Food and Drug Administration for the treatment of reading trouble due to NF1). While previous Lovastatin studies have not shown improved learning in NF1, none have closely mirrored the mouse model studies, in which medication was paired with learning. The current study does this by examining if Lovastatin will enhance learning when an individual is being taught a specific skill.

With enrollment for this study still ongoing, we asked one family to speak about their experience after finishing the study. The participant stated, “I was diagnosed with NF type 1 at age 11.  After I was diagnosed, the disabilities I had made sense. When I was younger I couldn’t get why things were so hard to make sense of.  The one disability that was the hardest to overcome was reading. Everything changed after I was diagnosed, and I was seeing doctors to get lots of scans and participate in different studies. The doctors told me around puberty I might start growing tumors.  I now have a quite a few tumors and they are pretty painful.  Going to Vanderbilt in Tennessee was really cool.  Everyone that I worked with was very fun and so welcoming. My last study visit was on my birthday and the lab staff got me cupcakes and a balloon that I still have. That was really sweet of them.” The participant’s parent added that the research team was “very organized and did a great job anticipating everything we needed to know ahead of time.”

For more study details or information about how to participate in this study, go to: or contact: or (615) 875-5534.