Terell Stafford joined Matt on trumpet while Martin Wind was on bass and Gary Versace was on the Hammond organ. His appearance at St. Louis Children’s Hospital was a joint partnership between the Washington University Neurofibromatosis (NF) Center and Jazz St. Louis.

Matt and Arts & Crafts performed selected songs from their repertoire including Scenic Route and Bubbles. These songs were some of the children’s favorites and involved audience participation. The children were encouraged to add to the sound with their own musical instruments during the song about taking the scenic route. The kids also played with bubbles while the band played their bubbles song. Doc ICU from Clown Docs even joined in the fun by playing a musical instrument and doing a dance for the children.

Both the band and the children had a great time and look forward to Matt Wilson and Arts & Crafts next visit.

Matt Wilson is a Grammy-nominated, New York-based drummer and is one of today’s most celebrated jazz artists. Universally recognized for his musical and melodic drumming style, Mr. Wilson is also a gifted composer, bandleader, producer, and teaching artist. In addition, Wilson’s dedication to jazz has helped establish him as a beloved world ambassador for the music, on and off the bandstand.

Recently, Mr. Wilson performed at the White House as part of an all-star jazz group for a State Dinner concert hosted by President Obama. He was also named the artist-in-residence at the Litchfield Jazz Festival. Wilson has also conducted over 250 outreach programs promoting jazz including an acclaimed Jazz for Young Peoples concert at Jazz at Lincoln Center.

Wilson was featured on the covers of both Downbeat and JazzTimes magazines in November 2009 and was voted #1 Rising Star Drummer in the Downbeat Critic’s Poll for 5 consecutive years. The readers of JazzTimes recently chose him as one of the top 4 drummers in the 2010 Readers Poll. In 2003, he was voted Drummer of the Year by the Jazz Journalists Association. Visit http://www.mattwilsonjazz.com/ to learn more about Matt.

Jazz St. Louis is a not-for-profit 501 (c) (3) whose mission is to lead our community in advancing the uniquely American art of jazz through live performance, education and outreach. For more information about Jazz St. Louis, visit http://jazzstl.org.

Team NF Center members collaborated late last year to submit two distinct posters for presentation at the conference. The first poster, presented by Courtney Dunn, PT, DPT, Amy Westfall, ODT, OTR/L, Lacey Hall, CCC-SLP, focuses on the clinical program model of the Washington University NF Center and how it is implemented in the clinic setting. The success the Washington University NF Center model is highlighted in this poster. The second poster, presented by Jill Isenberg, PhD, Elizabeth Soucy, BS and Taylor Ferguson, BA, focuses on the distinct clinical trials currently offered by the Washington University NF Center. This poster highlights the progress of the trials and the ease of participation for families and patients.

Congratulations and good luck to the Team NF members selected to present at the 6^th Annual St. Louis Children’s Hospital Perspectives in Pediatrics Conference!

Registration extended through 4/30/12

The following appeared in the April issue of the Record.

The Washington University Neurofibromatosis (NF) Center at will host its first research symposium on May 4. The event will focus on clinical and basic science research on neurofibromatosis 1, an inherited condition that increases risk of brain tumors in children and adults.

Morning presentations will describe new advances in basic research. The morning’s keynote speaker will be Luis F. Parada, PhD, of the University of Texas Southwestern Medical School. The keynote speaker for the afternoon, which will focus on clinical research, will be Bruce Korf, MD, PhD, of the University of Alabama at Birmingham.

Speakers from Washington University include: Larry Shapiro, MD, executive vice chancellor for medical affairs and dean of the School of Medicine, and David H. Gutmann, MD, PhD, director of the Neurofibromatosis Center.

The symposium, to be held in the Eric P. Newman Education Center, will begin at 8 a.m. A reception with the speakers will be held from 4-6 p.m.

Registration is free and open to the public. To register, e-mail Taylor Ferguson at fergusont@neuro.wustl.edu or visit http://nfcenter.wustl.edu and click the link for the symposium under “NF Center News.”

*Sponsored by the Chelew Family

REGISTER HERE

Symposium Agenda	Printable registration	E-registration: E-mail to Taylor Ferguson	Parents, is your child an artist? We are looking for artwork for our NF Symposium. Find out more below.

ACCOMMODATIONS & PARKING

Parkway Hotel 4550 Forest Park Avenue Saint Louis, MO 63108		Free parking available in the Metro Garage
Conveniently located next to the Eric P. Newman Education Center (EPNEC).		Please obtain a prepaid parking voucher at the registration table on Friday, May 4.

“We are very excited about this endeavor”, says Dr. Gutmann.  ” We hope that the results from this study will provide the most accurate prognostic information to physicians caring for individuals with NF1 affected by these tumors.”

This international consortium study was funded by the Children’s Tumor Foundation.

Dr. Johnson is spearheading work at the Washington University NF Center to develop a large international registry of individuals with Neurofibromatosis Type 1 (NF1). The one-of-a-kind registry will enable research aimed at understanding environmental and genetic risk factors that influence early onset cancer development in individuals with NF1

With funding from the American Cancer Society, Dr. Johnson and her colleagues will establish new internet-based methods to increase enrollment in the NF1 Patient Registry Initiative (NPRI).   These studies are designed to identify children and adults at greatest risk for specific medical problems in NF1. These studies may help clinicians to develop personalized treatment strategies that improve the quality of life for individuals living with NF1. 

Each year, they travel 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 of the Earth for a cure,” the Disney Marathon, the Marine Corps Marathon and the New York Marathon.

The Dominguez family and friends are on a mission to raise one million dollars for NF research. Thus far, they have raised over $274,000. To help them reach their goal of one million dollars, the Run for Eric team will be heading to Kenya in June 2012 to participate in their first international marathon.

To learn more about Run for Eric and how to support their cause, visit http://www.nfrunforeric.com/.

WHO: Matt Wilson and Special Guests

WHAT: Performance for St. Louis Children’s Hospital patients and their families

WHEN: Wednesday, March 21, 2012, at 10:00 am

WHERE: Child Life Playroom
8^th Floor
St. Louis Children’s Hospital
One Children’s Place
St. Louis, MO  63110

Matt Wilson is a Grammy-nominated, New York-based drummer and is one of today’s most celebrated jazz artists. Universally recognized for his musical and melodic drumming style, Mr. Wilson is also a gifted composer, bandleader, producer, and teaching artist. In addition, Wilson’s dedication to jazz has helped establish him as a beloved world ambassador for the music, on and off the bandstand.

Recently, Mr. Wilson performed at the White House as part of an all-star jazz group for a State Dinner concert hosted by President Obama. He was also named the artist-in-residence at the Litchfield Jazz Festival. Wilson has also conducted over 250 outreach programs promoting jazz including an acclaimed Jazz for Young Peoples concert at Jazz at Lincoln Center.

Wilson was featured on the covers of both Downbeat and JazzTimes magazines in November 2009 and was voted #1 Rising Star Drummer in the Downbeat Critic’s Poll for 5 consecutive years. The readers of JazzTimes recently chose him as one of the top 4 drummers in the 2010 Readers Poll. In 2003, he was voted Drummer of the Year by the Jazz Journalists Association. Visit http://www.mattwilsonjazz.com/ to learn more about Matt.

The comprehensive NF Center at Washington University is composed of clinicians and laboratory scientists focused on accelerating the pace of scientific discovery and its application to the care of individuals with NF.

NF is a set of complex genetic conditions that can affect almost every organ system, causing a predisposition for tumors to grow on nerves in the brain and throughout the body.

The mission of the NF Center is to galvanize and promote research on NF, achieving significant breakthroughs in the diagnosis and treatment of nervous system tumors, and establishing Washington University and St. Louis Children’s Hospital as international beacons for NF treatment and research. For more information about NF and about the care for individuals with NF at St. Louis Children’s Hospital.

Jazz St. Louis is a not-for-profit 501 (c) (3) whose mission is to lead our community in advancing the uniquely American art of jazz through live performance, education and outreach. For more information about Jazz St. Louis, visit http://jazzstl.org.

“They tirelessly and selflessly care for others with a special, gentle diligence that only someone in their profession could possess. They are the many exceptional nurses in our community, and St. Louis Magazine will honor their dedication and caring at our third annual Excellence in Nursing Awards. It is the least we can do to show our gratitude for the excellent nurses at our communities’ schools, hospitals, nurseries, colleges, and clinics who touch the lives of St. Louisans each and every day.”

“It was an especially challenging year for the ‘Excellence in Nursing’ judges, as each nurse nominee had superior recommendations and impressive backgrounds. However, the judges were able to narrow down the nominees to 71 finalists across 18 categories.”

In the May issue of St. Louis Magazine, the winner of each of the 18 categories will be announced.  Anne Albers is nominated for “Excellence in Pediatric (non-neonatal) Nursing.”

We extend our congratulations to Anne!

After less than one year, the NF1 Genome Project has enrolled over 150 participants.  Participating individuals are asked to provide a 5 mL (about a teaspoon) blood sample and fill out a short questionnaire about their or their child’s NF1.  The information gathered from the questionnaire and medical record (if available) is linked to the participant’s DNA on a secure server at The Washington University School of Medicine.

With advancing technology in the field of genome science, scientists and physicians at the Washington University NF Center are working together to determine how subtle changes in our DNA lead to the wide variety of medical problems seen in people with NF1.  Knowledge gained from these studies may one day help doctors and scientists better predict who will develop these problems, and may lead to the design of more effective drug therapies.

To learn how to participate, contact Taylor Ferguson at fergusont@neuro.wustl.edu.

Below are excerpts from the interviews. To read the full interviews click here.

It’s A Gift

“As a St. Louis Children’s Hospital physical therapist, Courtney Dunn, PT, DPT, works with children with neurofibromatosis (NF). She talked with the From the  Bedside staff about how lucky she feels to work with children with special needs and their families.”

Seeing Herself In A Patient

“Taylor Ferguson is the Washington University Neurofibromatosis Center Team NF Program Coordinator. She works closely with families and their children diagnosed with neurofibromatosis type 1 (NF1), a neurological disorder that affects nearly every major organ system in the body. Taylor helps to coordinate a special quarterly event for children with NF1 and their families called “Club NF.”.”