Highlights of 3rd Annual Alabama NF Walk
The 3rd annual Alabama NF Walk, held on October 16th in Veteran’s Park in Hoover, proved to be another highly successful event that raised both awareness of NF in our community and critical funds for NF-related research. Held in cities across the nation, the NF Walk is an important fundraising event for the Children’s Tumor Foundation (CTF), the major source of patient advocacy and research support for all forms of NF in both children and adults. Launched only three years ago in our local area, this year’s Alabama NF Walk raised more than $40,000 and registered more than 300 participants. In addition to raising awareness of NF among people in our community, the event also provided an opportunity for NF patients and families to enroll in the NF Registry, established by CTF in 2012; the purpose of the NF Registry is to notify NF patients who may be eligible for clinical trials or other research studies and to determine the frequency of NF characteristics. Several newly diagnosed patients and their families in attendance expressed their gratitude for the hope and support they received as a result of coming together as an NF community, which is an important and meaningful benefit of this special fundraising event.
Cognitive Function and Learning Difficulties
I’d like to focus our discussion this month on developmental issues and cognitive function in individuals with NF. Neurofibromatosis type 1 is associated with an increased risk of learning disabilities as well as a constellation of other symptoms that can impede school performance, including attention-deficit/hyperactivity disorder (ADHD), delayed language development, immature behavior, and low muscle tone. Sometimes cognitive problems are severe and evident early in life; however, sometimes these problems don’t appear until children have reached school age. It is estimated that 50% of children with NF1 have some type of learning problem, although this statistic may be an underestimate of the prevalence of learning issues in children with NF1. I find that the more one looks for learning problems in children with NF, the more these problems are identified.
We therefore keep a watchful eye out for learning difficulties among children with NF1. Although we don’t always perform formal developmental assessments, we do focus on developmental issues and evaluate whether a child’s development is in the normal range of what is expected for his or her age. Also, we educate families about the prevalence of learning disabilities in children with NF1 and arrange an evaluation with a neuropsychologist for a formal developmental assessment if needed. Some parents have found that developmental assessments administered by schools can be difficult to obtain. Families considering formal evaluations for their child with NF should seek out an experienced professional, usually a neuropsychologist with experience in administering developmental assessments, who is familiar with resources in the community and can also advocate effectively for their child.
It’s important to note that learning problems are also common among the general population. Because there is not a specific profile of learning issues unique to NF, there is not a specific management plan that is unique for those with NF1. Learning problems are managed using the same methods as for individuals who don’t have NF. Effective management of learning difficulties involves providing a supportive educational environment with a focus on early intervention to address specific issues such as delayed language development. The same management approach applies to children with ADHD, although these children may also benefit from the use of stimulant medication to help control symptoms.
Regarding other developmental issues in children with NF1, the low muscle tone that occurs in some children tends to improve over time. It may, however, evolve into less overall coordination in adolescence and adulthood. The lax muscle tone may cause some children with NF, even those of normal weight, to have a protuberant belly. This is a common occurrence, however, and not a cause for concern.
Questions sometimes arise as to whether parents should tell a teacher that their child has NF. The concern is that providing this information may cause a teacher to assume that the child has a learning disability. If learning issues are occurring, however, early intervention and support can lead to better outcomes for the child. Without this critical support, children are at risk for performing below their academic capabilities, which may lead to more limited opportunities in adulthood. Another consideration is that when parents don’t inform the teacher that their child has NF they are not in control of the information acquired and assumptions the teacher may form about their child. Most parents find that sharing information and recruiting the teacher as an ally is a helpful step in ensuring their child’s academic success. The Children’s Tumor Foundation offers a brochure designed specifically for educators that can be helpful in sharing information about NF (www.ctf.org or 1-800-323-7938).
While there are no medications that are effective in improving learning disabilities, there was hope that statin drugs may improve learning based on studies a few years ago using mouse models. However, three subsequent clinical trials showed no beneficial effect of statin drugs on learning. Possible reasons that statins showed improved learning in mice but not humans include the fact that mice are inherently different than humans and the measures for learning are also different. Also, the dosage administered to mice in the studies may have been higher than is safe for humans. Based on the findings of the clinical trials and the risks associated with statins, the use of these medications for learning disabilities is not a recommended approach to treatment.
Director's Blog
A Successful 3rd Annual Alabama NF Walk and a Discussion of Developmental Issues and Cognitive Function in NF1
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- Written by: Bruce Korf
