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 […]

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 […]

2014 Washington University NF Center Research Symposium Tremendous Success

The second Washington University NF Center Research Symposium, held on Friday, May 16, 2014, was a tremendous success with over 180 medical professionals, researchers and families in attendance. Keynote speakers Jonathan Epstein, MD, and Sean Morrison, PhD, discussed their research on NF1-associated heart disease and NF1-associated tumors, respectively, while Kent Robertson, MD PhD, described ongoing […]

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 […]

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: 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 […]

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, […]

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

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 […]

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

Eric 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 […]

Washington University NF Center Researchers Examine Methods to Engage Individuals with NF1 Worldwide for Research

The Internet provides new opportunities to recruit people with rare medical conditions to online patient registries for research. However, there is little known about the success of the different recruitment methods. Researchers in the Washington University NF Center have described recruitment strategies for the online NF1 Patient Registry Initiative (NPRI). This recent article was published […]

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.

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 […]