Washington University NF Center Family Holds 5K Run for NF 

Brooke Chelew always knew her younger sister had Neurofibromatosis Type 1 (NF1), but she never worried about it until the day her sister had a seizure. From that moment on, Brooke made it her mission to teach herself and her community about NF1.

In February, Brooke, along with her mother Kim, first approached the Washington University NF Center about sponsoring a 5K Race to raise awareness about NF. Quickly, their ideas blossomed into the first annual Quest for a Cure: Fun Run/Walk for NF.

Aided by a core team of young women from local high schools, including Ursuline Academy, St. Joseph’s Academy, Cor Jesu Academy and Crossroads College Preparatory School, Brooke and her family planned and organized this exciting event. Despite the dreary weather on race day, April 27, 2013, 196 individuals came out to Queeny Park to run and show support.

We thank Brooke, her family and her team for their generous support of the Washington University NF Center.

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Washington University NF Center Family Raises NF Awareness

The Walk family partnered with Megan Diekemper, owner of Diekemper Photography, in order to raise awareness about NF.

Every year, Ms. Diekemper hosts an event called Tutus & Ties, where children have their pictures taken in tutus or ties, and the proceeds are donated to a worthy cause.

When Amanda and Brian Walk heard about this event, they contacted Diekemper Photography, explaining what NF is and how much it would mean to them if their cause could be supported.

Touched by their story, Ms. Diekemper was thrilled to help support NF awareness, and made the Washington University Neurofibromatosis (NF) Center the focal point of her 2013 Tutus & Ties event.

We thank the Walk family and Megan Diekemper for their generous support of the Washington University NF Center!

To learn more about Diekemper Photography, please visit their WEBSITE.

To learn more about Tutus & Ties, please visit the Diekemper Photography BLOG.

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Washington University NF Center Families Featured in the Riverfront Times

On January 17, 2013, the Riverfront Times published an article on the Washington University NF Center and its families. The article covered all aspects of the Washington University NF Center from research to clinical care to Club NF. The article, by Aimee Levitt, can be read HERE. To view pictures of the Club NF event described in the article, please go HERE.

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Second Annual fuNFest a Huge Success

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Washington University NF Center Patient featured on St. Louis Children’s Hospital Website

Jolene Green a patient at the Washington University Neurofibromatosis (NF) Center at St. Louis Children’s Hospital, was recently featured in a story on the St. Louis Children’s Hospital website, “Meet Our Patients”.

Jolene was diagnosed with NF1 at the age of two, and is cared for by Dr. David Gutmann, MD, PhD, the Donald O. Schnuck Family Professor in Neurology, and Director of the Washington University NF Center.   The story follows some of Jolene’s challenges and highlights the phenomenal care she receives at St. Louis Children’s Hospital. For more information and the article in its entirety, visit

http://www.stlouischildrens.org/about-us/meet-our-patients/jolene-facing-lifetime-challenges

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NF Center Patient Places at Academy of Science St. Louis Science Fair

Zoe Alper, a 6th grade student at Solomon Schechter Day School in St. Louis and patient at the Washington University NF Center, entered and placed at her school’s Science Fair. Zoe placed second at the Solomon Schechter Day School science fair with an experiment focused on Paper Chromatography. Zoe’s second place win earned the opportunity to compete and present at the Academy of Science St. Louis Science Fair.

At the Academy of Science St. Louis Science Fair, a region-wide event, Zoe placed third and was also honored with a special award from the St. Louis Chapter of the American Chemical Society for her outstanding experiment in Paper Chromatography.

Proud family members and supporters of the Washington University NF Center are Nancy, Keith and Max Alper of St. Louis, MO.

The Washington University NF Center and Team NF are extremely proud of Zoe’s accomplishment and extend our congratulations to her!

   

 

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Matt Wilson Performs at St. Louis Children’s Hospital

On Wednesday, March 21, drummer Matt Wilson and his band Arts & Crafts performed at St. Louis Children’s Hospital Child Life Playroom for patients.

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.

 

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“Run For Eric” Team Races for NF Center

Eric Dominguez was two years old when he was diagnosed with Neurofibromatosis type 1 (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”.

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/.

 

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A Wonderful Holiday Gift

This holiday season, we received two special gifts from Rachel and Aaron Posner.  These thoughtful young people decided that they wanted to donate some of their Chanukah money to the Washington University NF Center.  We wanted to share their letters with you, and express our gratitude and appreciation for their thoughtfulness.

 

 

 

 

 

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Team NF Members Featured in St. Louis Children’s Hospital Blog

Washington University Neurofibromatosis (NF) Center team members Courtney Dunn, PT, DPT and program coordinator, Taylor Ferguson were recently featured in the St. Louis Children’s Hospital patient care blog, From The Bedside.

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.’.”

 

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NF Center Family Raises Funds and
Awareness For NF1

In September, 2011, Amanda and Brian Walk hosted the first annual fuNFest in Vandalia, Illinois.  The Walks wanted to raise awareness about neurofibromatosis type 1 (NF1), and decided to enlist their town’s help in this effort. The Walk’s raised a small army of volunteers and secured donations from silent auction, food, drink, and entertainment sales.

Amanda was proud of her town’s enthusiasm towards the event. “Over 112 various silent auction items were donated by members of the community and local businesses,” explains Amanda. Brian admitted, with a smile, that, “One of the biggest successes was Cow Patty Bingo.” Other events included face painting, a bounce-house, raffle, bake sale and much more.

The Walk family hopes to host this event each year after the approximately 200-person attendance. “We just wanted to get the word out there about what NF1 is and hopefully raise some funds to further NF1 advancements,” said the Walks.

Stay tuned to the NF Center website for upcoming fuNFest events.

 

 

 

 

 

 

 

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Dr. Gutmann Featured in NF Inc. Network video

Washington University NF Center Featured in
HEC TV Special

David H. Gutmann, MD, PhD, Director of the Washington University Neurofibromatosis (NF) Center, was recently featured as part of a St. Louis Higher Education Channel (HEC) special on importance of music in medicine.

In the April 2011 edition of “I Love Jazz”, Dr. Gutmann hosted jazz violinist Regina Carter at St. Louis Children’s Hospital, where she used music to lift the spirits of children undergoing treatment for cancer and other medical conditions.   Ms. Carter speaks about the power of music.

One of the children who met Ms. Carter when she first visited St. Louis Children’s Hospital several years ago was Zoe Alper, a young lady with NF1 who was treated for a brain tumor by NF Center neurosurgeon, Dr. Jeffrey Leonard.  Zoe and her mother, Mrs. Nancy Alper, joined Dr. Gutmann to discuss how scientists and medical professionals at the Washington University NF Center are working together to find new treatments for brain tumors affecting children with NF1.

HEC-TV is St. Louis’ leading producer of education, arts, and cultural television programming.  This special was produced by Mr. Cordell Whitlock

Legally Blind High School Golfer Wins National
Sportsmanship Award

by Sally Tippett Rains

Daniel Crum of Affton High School was recently honored at the National Sportsmanship Awards–the only person from St. Louis to be honored–in a televised event. The awards committee from the St. Louis Sports Commission found out about him through an article written on Affton.Patch.com and here is an excerpt from that article:

Daniel Crum, 15, is the first legally blind person ever to play on the Affton golf team. According to the Missouri State High School Activities Association, he is the only legally blind high school golfer in the state they know of.

“I like golf because it’s something I can play, even with my disability,” said Crum, who also likes whiffle ball, flag football and basketball.

When Daniel was 2 years old, doctors discovered a brain tumor on his optic nerve. He had chemotherapy twice, but parts of the tumor remain, requiring annual MRIs. He is able to get some visual correction with glasses, and he has made his own adjustments to be able to play sports.

“He can’t see out of his left eye and in his right eye from middle to the nose,” said his mother, Elizabeth Crum. “He has no peripheral vision at all.”

“I’m really proud of Daniel,” said his father, Dan Crum. “Last year he won the ‘Most Enthusiastic Player’ on the team.”

On the golf team, Crum plays by the same rules as everyone else.

“Daniel gets no special help, except to have someone spot his ball,” said Dan Oliver, the athletic director at Affton. “I enjoy talking to him each morning about all his activities, but I think he enjoys talking about golf the most.”

Dan and Elizabeth Crum attend a brain tumor support group, and they volunteer their time at St. Louis Children’s Hospital and Ronald McDonald House. They also make an effort to include a lot of church events and fun in their lives.

Due to Crum’s disability the family gets invited to activities with various charities, but Crum prefers his sports activities, such as his summer baseball league. He played on a team that included children with cancer or other disabling medical conditions, as well as their siblings and got to meet Cardinals mascot Fredbird, former Cardinal Glenn Brummer, and Cardinals players Brendan Ryan, Skip Shumaker and Colby Rasmus.

“That was so exciting,” said Crum. “I enjoyed the Cardinal players coming out and taking their time to play with us.”

Several years ago Daniel Crum  appeared in “Beanstalk: The Musical” a play performed at the Webster Theatre Guild.

“Daniel is very enthusiastic about all Affton events,” said Oliver. “He is a great kid.”

And like any high school student, Crum enjoys Facebook, making status updates like “I love all kinds of sports!!! Church and of course girls.”

 

Teen Designs Care Packages for Children
With NF1 Worldwide

For her Bat Mitzvah project, Elana Loftspring, a teenager in the St. Louis Children’s Hospital Neurofibromatosis Clinic designs care packages for other children with NF1 worldwide. From Elana With Care Elana is passionate about many things:  rock-climbing, chocolate, Broadway musicals and of course, the University of Texas Longhorns. She is also passionate about reaching out to other children affected by NF and being their “NF Buddy.” Through her care package project, Elana has been able to turn her desire to help others into friendships that benefit her, as well.		Go University of Texas Longhorns!