A Message from the Director – Spring 2014

After a long hard winter in St. Louis, it is nice to feel a warm breeze again and see the flowers popping up. As we look forward to summer, I want to update you on the progress and events in the Washington University NF Center.

First, we will be celebrating 10 years of excellence in the Washington University NF Center and 20 years of providing multi-disciplinary care in the NF Clinical Program at St. Louis Children’s Hospital. To mark these momentous milestones, we hosted the second Washington University NF Center Research Symposium on May 16, 2014. The event was a tremendous success with over 180 medical professionals, researchers and families in attendance.

Second, based on extremely positive feedback, we are now expanding our Club NF activities to include Beat NF, a jazz music therapy-based program for toddlers, sponsored by the Washington University NF Center, in partnership with Jazz St. Louis and Maryville Music Therapy.

IMG_2626

Third, there have been several exciting research advances to report. For example, researchers in the Washington University NF Center have found a link between patient gender and the risk of vision loss in NF1. In addition, Dr. Kimberly Johnson and her colleagues published a manuscript on their successes with the NF1 Patient Registry Initiative.

To stay up to date with our progress, I invite you to visit our website regularly and join us on Facebook.

Best wishes,

David H. Gutmann, MD, PhD
Donald O. Schnuck Family Professor
Director, Washington University NF Center

Nicole’s Nook: Enabling Restrictions on Your iPad

The iPad is known for providing both entertainment and productivity to adults and children alike. We encourage children with NF1 to use the iPad in academic environments to increase productivity; however, children may have difficulty using the iPad responsibly when entertainment is such an easy temptation.

Luckily, there are many built-in features on the iPad that an adult can enable or disable in order to help children stay on task. The restriction settings on your iPad can act as an automatic supervisor, even if you can’t be present.

Enabling General Restrictions

  • Go to settings > general > restrictions
  • Set a 4 digit restrictions passcode (it is recommended that this is different from your general passcode to get into your device OR your guided access passcode).*
  • On the restrictions page you can set privacy settings, allow changes, and manage the Game Center.

Decreasing Potential Distractions

  • Pick and choose what you would like to have on your iPad. For example, you can remove Safari if your child is distracted by surfing the internet.
  • Restrict installation or deletion of apps so that you can choose which apps are downloaded to the iPad as well as when they are downloaded or removed.
  • Block explicit music, music videos, podcasts or iTunes U media.
  • Set the ratings of allowed movies, TV shows or apps.  You can also restrict all movies, TV shows and unwanted apps if you desire
  • Restrict the types of websites that are allowed.

*When setting your general restrictions password it is important to select immediately. When you make this selection, the iPad will require a password for every transaction including in-app purchases. This will keep you from experiencing excessive iTunes’ charges. Another way to avoid unexpected charges is to remove the credit card from your account and only use iTunes gift cards.

Take a close look at your restrictions and make sure you have controls in place to enable your child to use their iPad in a safe, responsible and productive way!

Nicole Weckherlin, OTR/L

Courtney’s Corner: Age Appropriate Chores for Children

As summer approaches, parents may feel like their time is stretched to the limit between work, having the children home from school and going to and from daily summer activities.

With everything going on, it is easy to give your child access to an iPad or the TV as a source of entertainment while you complete daily chores. While screen time can be fun and sometimes even beneficial, allowing children too much time in front of a screen can be detrimental to their development. In particular, children with NF1 should be encouraged to be both physically and mentally active in order to work on skills commonly delayed in children with NF1.

To decrease the amount of screen time needed and encourage the development of important skills, such as self-help and attention skills, consider getting your child involved in the household chores. The New York Times recently ran an article on age-appropriate chores for children ages 2 and up. Their list of chores is a great starting point for helping your children learn about self-sufficiency and taking part in family responsibility.

On top of the benefit of life-skill development, having your child help with chores will also free up some of your time. Use that extra time as family time. Set aside some hours every week to do something together. Maybe your family enjoys going on bike rides on Saturday morning or perhaps you want to have family game night on Fridays. Spending time together as a family will help your child develop social skills as well as work on any skills associated with your chosen activity.

Having trouble getting your child started on chores? Consider using one of the reward charts recommended by Washington University NF Center Occupational Therapist Nicole Weckherlin, OTR/L. A reward chart will help your child visualize your expectations and give them a sense of accountability.

Courtney Dunn, PT, DPT

UPDATE: NF Clinical Trials for the Spring 2014 Quarter

We’ve updated the NF Clinical Trials section of our website via clinicaltrials.gov.

Studies that have recently been added include:research

Endostatin Study for Patients With NF2 and NF2-Related Tumors

Study of Axitinib in Patients With Neurofibromatosis Type 2 and Progressive Vestibular Schwannomas

Clinical trials are an exciting and important opportunity for people with NF1 and NF2 to make a difference in their own lives as well as the lives of others affected with NF1 and NF2. When you participate in a clinical trial or study you are:

  1. Receiving the most advanced care
  2. Giving to future generations of people living with NF1 and NF2
  3. Helping to change the way we practice medicine

If you are interested in learning more about the importance of participating in clinical trials or about clinical trials in general, please visit NF Clinical Trial Facts.

Governor Nixon Proclaims May 2014 NF Awareness Month

Jay W. Nixon, governor of Missouri, has proclaimed May 2014 Neurofibromatosis Awareness Month in Missouri.

In doing so, Governor Nixon acknowledges all individuals living with NF as well as the work researchers at the Washington University NF Center undertake daily in an effort to find new and better treatments for individuals living with NF.

Additionally, the proclamation highlights the upcoming Washington University NF Center Research Symposium which will be held on May 16, 2014 and will celebrate two decades of outstanding research in NF at the Washington University NF Center.

We extend our gratitude to Governor Nixon for helping us to raise NF Awareness. Please join us in celebrating NF Awareness though out the month of May.

gov nf gov nf 2

Mayor Slay Proclaims the Week of May 12 “NF Week”

Mayor

Francis G. Slay, mayor of the City of St. Louis, has proclaimed the week of May 12 through May 16, 2014 as “NF Week” in the City of St. Louis.

In doing so, Mayor Slay acknowledges all individuals living with NF as well as the work researchers at the Washington University NF Center undertake daily in an effort to find new and better treatments for individuals living with NF.

Additionally, the proclamation highlights the upcoming Washington University NF Center Research Symposium which will be held on May 16, 2014 and will celebrate two decades of outstanding research in NF at the Washington University NF Center.

We extend our gratitude to Mayor Slay for helping us to raise NF Awareness. Please join us in celebrating NF Awareness though out the month of May.

Washington University NF Center Family Raises NF Awareness with Run for Eric

Microsoft Word - runf for eric.docxEric Dominguez was two years old when he was diagnosed with NF1.  Since that time, his family has become a passionate advocate for NF research. To raise funds for research and to promote awareness about NF1, the Dominguez family created a group called Run for Eric.

Bi-annually, the Dominguez family travels to different locations around the globe to participate in marathons. In previous years, the Run for Eric team has participated in the Antarctic Marathon “End of the Earth for a Cure,” the Disney Marathon, the Marine Corps Marathon, the New York Marathon and in 2012 their first international marathon–the Safaricom Marathon in Kenya.

In June 2014, Run for Eric heads to Easter Island for their second international marathon. The Dominguez family and friends are on a mission to raise one million dollars for research at the Washington University NF Center.

Help them reach their goal! Check out the Run for Eric website for details.

Symposium Sneak Peek: Dr. David H. Gutmann Discusses Personalizing Medicine for Children with NF1

David H. Gutmann, MD PhD, is the Donald O. Schnuck Family Professor of Neurology and Director of the Washington University NF Center. He is an internationally recognized expert in NF, and was a member of the research group that identified the entire NF1 gene. He has twenty years of experience in the care of children and adults with NF, and directs a large basic science research laboratory working on NF.

At the Washington University NF Center Research Symposium, Dr. Gutmann will describe ongoing basic science and clinical research studies geared towards personalizing medicine for children with NF1. Dr. Gutmann will be speaking at 2:30PM on May 16, 2014.

Grad Student Profile: Cynthia Garcia – Studying Spinal Tumor Formation in NF2

Cynthia Garcia is focused on understanding why spinal tumors form in people with NF2. Using a combination of methods, she has identified a promising drug target for potential treatment of NF2-associated ependymoma.

Cynthia is a PhD candidate in Neuroscience at Washington University. She will present her dissertation in June 2014.

06972cc80399 cindy 1 cindy 2

SAVE THE DATE: Club NF Zoo Hunt!

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

Please join us at the Saint Louis Zoo on June 7, 2014 for an animal-themed day focusing on sensory integration, gross motor skills and social skills.

Families will enjoy an interactive educational talk by the Saint Louis Zoo staff focusing on Missouri wildlife and will have the opportunity to participate in our Motor Skills Scavenger Hunt by finding and imitating their favorite animals at the St. Louis Zoo.

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