Symposium Sneak Peek: Dr. Sean Morrison Discusses Stem Cells and NF1

morrison-resizedThe Washington University NF Center is pleased to welcome Dr. Sean Morrison as one of the 2014 Washington University NF Center Research Symposium keynote speakers.

Sean J. Morrison, PhD, is the founding Director of the Children’s Research Institute and the Mary McDermott Cook Chair in Pediatric Genetics at the University of Texas Southwestern Medical Center as well as an Investigator of the Howard Hughes Medical Institute.

The Morrison laboratory is investigating the mechanisms that regulate stem cell function in the nervous system and the ways in which these mechanisms are hijacked by cancer cells to enable proliferation and metastasis.

At the Washington University NF Center Research Symposium, Dr. Morrison will talk about his groundbreaking work on the role of the NF1 gene in controlling stem cell function in the normal nervous system and in the setting of NF1-associated tumors. Dr. Morrisson will be speaking at 1:00PM on May 16, 2014.

NEW STUDY: Social and Behavioral Health in NF1

ASD logo 3Researchers in the Washington University NF Center are currently recruiting both adults and children with NF1 to better understand the social and behavioral problems sometimes experienced by individuals with NF1. Recent studies have suggested that people with NF1 often have features seen in individuals with autism spectrum disorder. To better understand this possible connection, Dr. John Constantino and his colleagues have initiated a detailed study as an initial step towards uncovering the potential genetic causes.

Washington University NF Center Toddlers Show Progress After Beat NF

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Music Therapist Brian Hilderbrand teaches a song

Children with NF1 can experience a range of developmental delays, including problems with gross motor skills and trouble learning how to appropriately socialize. A recent study showed that these delays can affect the development of children with NF1 as young as the age of three. Studies like this, and those currently taking place at the Washington University NF Center, highlight the need for early intervention.

Beat NF is a collaborative music therapy program co-developed by the Washington University NF Center, Jazz St. Louis and the Maryville Music Therapy Department. The goal of the program is to help toddlers with NF1 strengthen gross motor skills, improve social skills, and focus their attention through jazz music. After the completion of the first session, it has become clear that positive effects were emerging.

All toddlers who attended Beat NF were screened by Washington University NF Center physical therapist Courtney Dunn, PT DPT, for motor skills on the first and last days of the event. “Every child had a better motor screen after the final event and could preform skills they were unable to preform during the first screen,” said Dunn. Some of those skills included the ability to leap, catch a ball and walk sideways.

One child, Sophia age 4, even showed growth in unexpected areas. “Her speech therapist and family members were amazed when they noticed a sudden change in her speech,” said Dori, Sophia’s mother, “The only change in what we were doing was having Sophia attend Beat NF and listen to the Beat NF music on days in between sessions.”

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Sophia and family at a previous event

Sophia, who was recently diagnosed with a brain tumor, became a leader during Beat NF sessions, encouraging her peers to follow the movements and sing along. “I think being with other children her age was definitely the highlight for Sophia. The chance to experience a group dynamic was huge for her,” said Dori.

The Washington University NF Center and our collaborators are thrilled with the positive outcomes from our first session of Beat NF. Beat NF plans to launch new sessions in May 2014 so stay tuned for details!

Nicole’s Nook: Apps that are More than Recreation

The iPad often gets a bad rap.  It’s too trendy, it’s too techy, it’s too mainstream, and it’s too gamey.  I’m not sure if all of those are legitimate words, but you get the point.  It looks like play, end of story.  And to give something so recreational to kids in an educational setting can be, well, just irresponsible.

While this is a valid concern and can be true in some instances, the iPad, when equipped with the right apps, the right features, and the right supervision and direction, can be a powerful learning tool.

Apple’s own apps, such as iMovie and GarageBand, are two of these misjudged “recreational” apps.  Clearly making a movie or a song is fun, but it also has the potential to provide creativity, inspiration, problem-solving opportunities, and even augmentative communication.

iMovie, available from iTunes for $4.99, is a powerful movie-making app, using photos or videos that you take with your iPod, iPhone, or iPad.  While you can make a short film or trailer, you can also create a presentation, a photo journal of your summer vacation, or tell a story.  For children who have difficulty with expressive communication, this app can be especially powerful.  Even for children who have difficulty with public speaking, this app can instill confidence.

GarageBand, also $4.99 and available from iTunes, is a music-making app that allows creativity and imagination.  You can play, record, mix, and share music.  It promotes expression and provides sensory input.  There is no right or wrong answer when making your own music!

The next time that you are browsing through the App Store, keep an open mind.  Many of those “fun” apps actually have true educational value, foster creativity, and provide alternative strategies to improve delays frequently seen in children with NF1.

Nicole Weckherlin, OTR/L

UPDATE: Clinical Research Studies at the Washington University NF Center – Winter 2014

Curious how our current clinical studies are going? Find out below!

NF1 Genome Project (NF1GP)NF 1 Genome Project- Washington University Neurofibromatosis Center/ St. Louis Children's Hospital- NF DNA Bank- NF

We have obtained 354 blood samples from individuals with NF1 and have begun using 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 develop brain tumors as well as a study looking at how DNA might affect the number of dermal neurofibromas a person with NF1 develops.

NF1 Patient Registry Initiative (NPRI)NPRI- NF 1 Patient Registry Initiative- Washington University Neurofibromatosis Center/ St. Louis Children's Hospital- NF1

1400 individuals with NF1 have registered and completed questionnaires for the NPRI. Individuals from all 50 states, the District of Columbia and 47 countries have participated. We are still recruiting! If you are interested in participating, or you know someone who is interested, please go HERE.

Hypotonia and Brain Tumors

4 children with NF1 have participated in this study. We are still recruiting! Children between the ages of 0 and 7 will be evaluated for hypotonia in clinic and those eligible will be approached to consider participating.

NF1 Brain Trust Project (NBTP)NF1 Brain Trust

15 individuals have donated skin samples to this study. We are still recruiting!

Maternal Folate Metabolism and Brain Tumors

60 families have completed this study and samples are currently being prepared for analysis.

SAVE THE DATE: Club NF Creates Art!

The Washington University NF Center in collaboration with the St. Louis Children’s Hospital Foundation is excited to announce its February 2014 Club NF event – Club NF Creates Art!

Please join us at the St. Louis Artist’s Guild in Clayton on February 1, 2014 at 10AM to work on fine motor skills and self-expression. Children will have the opportunity to work directly with local professional artist Ben Guffee and all art created will be displayed at the 2014 Washington University NF Center Research Symposium on May 16, 2014.

To learn more, check out our flyer or contact Kirsten Brouillet at brouilletk@neuro.wustl.edu.

NF Camp Provides Children and Teenagers with NF1 Chance to Make New Friends

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Elana attended Camp New Friends in the summer of 2013.

Living with NF1 can be a challenge and sometimes can cause children and teenagers to feel isolated from their peers. Because NF1 is uncommon, children might feel like no one understands their experiences. Brainy Camp’s Camp New Friends offers children and teens with NF1 the opportunity to meet other individuals with NF1, giving them a support system they may otherwise lack.

Washington University NF Center teen, Elana Loftspring, attended Camp New Friends for the first time last year and had an extremely positive experience. Elana met people just like her who had to attend regular appointments and deal with different features of NF1 such as learning disabilities and brain tumors. For the first time, Elana felt like she had friends who really understood what she was going through.

Living with NF1 can be challenging, but with a strong support system children and teens with NF1 will feel less alone and better equipped to live with NF1. For more information about living with NF1 and dealing with feelings of isolation due to NF1, please read Living with NF1: A Guide for Teens and Young Adults.

Recent Study Sheds Light on Learning Problems in Preschool Age Children with NF1

In addition to café-au-lait macules, difficulties with learning are seen in as many as 80% of school-aged children with NF1. Affected children may have problems with attention, visual perception, executive function, language, reading, spelling and mathematics. Each of these issues can make success in school extremely difficult without proper support and therapy.

A recent study from researchers in Australia sought to better understand the cognitive function of 3-year-old children with NF1. They evaluated 43 children with NF1 and 43 unaffected children, and found that 3-year-olds with NF1 had significantly lower intellectual functioning than their unaffected peers. These results underscore the need to closely monitor cognition in young children with NF1 to ensure that each child receives the correct resources to promote further development and future success.

At the Washington University NF Center, we offer a variety of resources to support cognitive development in children with NF1. For example, Club NF is a free, bi-monthly event involving play-based therapy for children with NF1. Additionally, NF1 app recommendations provides a list of iPad Apps that can aid in development of multiple skills including fine motor, visual perception, organization, productivity and academics. The Apps are listed in age appropriate groups for your convenience.

Lorenzo J, Barton B, Arnold SS, North KN. Cognitive features that distinguish preschool-age children with neurofibromatosis type 1 from their peers: A matched case-control study. J Pediatr. 163: 1479-83, 2013.

HOLIDAY SPECIAL: Help Your Child Develop Skills Delayed in Children with NF1

Help your child start off the New Year right with a resolution to get active this year. The Washington University NF Center promotes play-based therapy for children with NF1, and it’s easy to integrate this philosophy into your everyday life.

Play-based therapy is all about using play to work on skills that are sometimes delayed in children with NF1. By having your child try out new activities like skating or painting you are actually giving your child the opportunity to work on developing important skills such as gross motor or fine motor skills.

new year 3To make your resolution:

  1. Have your child choose some new activities that he or she might be interested in trying
  2. Set a realistic schedule for your family to engage in these activities
  3. Have your child write his or her goals on colored paper so he or she remembers what to work toward
  4. Get active! Practicing is the best way to get good at something. Remember, it may take a child with NF1 longer to master some skills, like riding a bike, but that doesn’t mean they shouldn’t try. Children learn at their own pace. Be supportive and remember to let your child take breaks if he or she is feeling frustrated.
  5. Celebrate victories. As your child achieves his or her goals, remember to celebrate and then take on new challenges!