Forward Strides 4NF Committee Fundraises for the NF Center

The Forward Strides 4NF committee visited the Washington University NF Center to present a $19,000. It was the largest yearly fundraising total since their inception.

Forward Strides 4NF is a charity that was started in 2016 by Gina Wilburn to honor her daughter and husband, who both have Neurofibromatosis (NF). Each year the event has had over 200 registered walkers, with more than 30 volunteers. Entertainment at the event included a bounce house, bubble bus, face painting, food and beverages donated from local restaurants, as well as sports mascots to cheer participants at the finish line. Additionally, a raffle, which included over 120 amazing items, has proven to be a huge attraction every year.

The Washington University NF Center extends its heartfelt gratitude to Gina and the Forward Strides 4 NF committee for their continued support.

Patient Spotlight: Phillip

I’m often asked what brought us to St. Louis, since neither my husband nor I have family in the area.  A promising job offer in 2000 prompted us to move from North Dakota, but it wasn’t until years later that I would come to realize our move was “meant to be” for an entirely different reason.

Our son, Phillip, was born in 2003.  At his six month exam, our pediatrician noticed several birth marks on his torso, which led to a referral to Dr. David Gutmann at St. Louis Children’s Hospital.  We would learn that these birthmarks were actually cafe’-au-lait spots and one indicator of Neurofibromatosis Type 1 (NF1).  Phillip was five years-old when a second indicator, Lisch nodules on the iris of his eyes, was found, and the diagnosis of NF1 was confirmed.  People with NF1 are at risk for developing tumors throughout their bodies.  Naturally, we were scared and confused about what this meant for our child’s future.

Dr. Gutmann was wonderful, and he patiently answered our questions, as well as assured us that Phillip was capable of leading a normal, productive life.  He introduced us to his team of specialists at St. Louis Children’s Hospital and the powerful network of support they provide: physical therapy, occupational therapy, speech pathology, pediatric neuropsychology, orthopedic surgery, and ophthalmologogy– a group of talented and caring professionals that we’ve utilized over the years.

Another support that has been beneficial to our family is Club NF, offered through the Washington University NF Center.  Phillip was six years old when we first attended a Club NF activity, and he loved it immediately.  As he’s grown older, these free activities have allowed him to learn and practice social and motor skills by swimming, ice-skating, cooking, playing chess, dancing, painting, wall-climbing, animal encounters at the zoo, learning about dinosaur digs at the Science Center, and even yoga surfing!  While the kids play and interact, parents have the opportunity to hear from various speakers and enjoy making friendships, as well.  Questions from parents may vary from educational (IEP, 504, technology), emotional, social, and behavioral, and the Washington University NF Center staff does a fantastic job finding the right speakers to address these concerns.

Fast forward to 2019 . . . Phillip is now 15 and a typical teenager with his driver’s permit, cell phone, and love of gaming. A sophomore in high school, he’s an honor student, enjoys golf and weight conditioning, plays piano, and works to perfect his German.  NF1 does not limit him.  He now participates in Teen NF, which provides a friendship group that understands and accepts him because they are going through the same journey.  Knowing that there are other teens with NF1 has helped him be comfortable with his diagnosis.  He now enjoys volunteering at Club NF and taking on a mentor role for the younger kids.

I do believe our move to St. Louis was “meant to be” and we were guided here to have access to St. Louis Children’s Hospital and Dr. Gutmann and his team of specialists at the NF Clinic. We will be forever thankful for the dedication and compassion they show for their NF patients and continued research.

– written by Suzy Effertz

 

Olivia Cobb joins the Gutmann Laboratory

Olivia Cobb recently joined the research laboratory of NF Center Director, David H. Gutmann, MD, PhD, as a graduate student research assistant. Olivia received her Bachelors in Liberal Arts from Thomas Aquinas College in California in Philosophy and Theology prior to pursuing a Master’s Degree in Biostatistics at Washington University in St. Louis.

Matching her love of science, math, and philosophy with a desire to use her skills in the field of medicine, she started working in the NF Center in September 2018.  Ms. Cobb has been employing bioinformatic analysis approaches to understanding the medical problems facing children and adults with NF1.

Missouri Legislators Visit the Washington University NF Center

A delegation of Missouri legislators toured St. Louis Children’s Hospital to learn more about the integral relationship between Washington University and the Barnes-Jewish-Christian (BJC) Health Care System. These state representatives heard presentations about innovative research being conducted at the Washington University School of Medicine, and how this benefits children and families in Missouri.

The Washington University NF Center was chosen as one of the highlighted programs for this tour. Dr. David Gutmann spoke about how research in the NF Center informs better care of children and adults with NF1. He demonstrated how research and clinical care are inseparable, emphasizing that the treatments of tomorrow will come from research being conducted today.

We thank Ellie Glenn for her tireless efforts to support the important science that aims to change the way we care for children with NF and other pediatric conditions.

Message from the Director

In 2018, as we celebrate 25 years of Neurofibromatosis research and clinical care at Washington University, Neurofibromatosis (NF) Center research and clinical members have continued to expand investigative initiatives aimed at developing personalized medical approaches for people affected with NF. We are grateful for the continued partnership with our families that make these high-risk, high-payoff ventures possible.

ADVANCING NF RESEARCH
It has been another year of progress in our understanding of neurofibromatosis, with numerous researchers in the Washington University NF Center publishing important new discoveries. These include advances in our understanding of the contribution of immune system cells to brain tumor growth, discovering a correlation between the location of the NF1 gene mutation and autism, identifying a new marker for malignant peripheral nerve sheath tumors, and studying autism behaviors in mice engineered with Nf1 gene mutations. In addition, two of our Pediatric Neurology residents completed the largest study of MRI scans in children with NF1, demonstrating that brain tumors are more frequently detected than previously appreciated. Moreover, we have forged new collaborations with our colleagues in the Institute for Informatics and the Intellectual and Developmental Disabilities Research Center at Washington University, as well as expanded our international efforts with Professor Helmut Kettenmann at the Max Delbrück Center in Berlin. We also continue to enlarge our unique collection of resources essential to making these advances, including the NF1 Genome Project used to discover subtle DNA changes that might one day serve to predict the risk of developing specific medical problems in people with NF1.

RAISING NF AWARENESS
September 5, 2018 marked the 4th biennial Washington University NF Center Symposium. Highlighted by two internationally-renown keynote speakers, Dr. Frank McCormick and Dr. Eric Legius, numerous NF Center investigators presented advances in NF research and clinical care.
In addition, Washington University NF Center neuroscientists participated in CAMP NEURO, a program designed to educate and expose high school students to medical research. Visitors to the NF Center learned how laboratory studies have advanced our understanding of the health problems affecting children and adults with NF1. Following the tour, one student from the group was inspired to become a neuroscientist and contacted us about working in one of our laboratories next summer.

The Walk Family Hosts FuNFest to Raise Money for NF Research

On November 21, 2018, Brian and Amanda Walk and their daughters, Jordan and Bella, visited the Washington University NF Center to celebrate another successful fuNFest event.

FuNFest is a family-friendly festival designed to create awareness about NF and to raise funds for NF research. The event includes games, bounce houses, music, a live auction, silent auction bidding, and the infamous Cow Patty Bingo.

This year’s fuNFest raised over $18,000, which will fund laboratory research initiatives aimed at developing personalized medicine approaches for people with NF1. The Washington University NF Center extends its heartfelt gratitude to Amanda and Brain Walk, who worked tirelessly to plan this event.

Our patients and their families are an integral part of our mission to provide exceptional care through groundbreaking research. Because of families like the Walks, we are able to conduct cutting-edge research and provide outstanding complementary care resources.

Nicole’s Nook: SuperKeys App

Keyboarding is meant to be a quicker, more functional option for students, especially those who struggle with handwriting. Utilizing features such as word prediction and shortcuts can significantly reduce keystrokes, thus increasing productivity as well as overall functional academic independence. However for some, the online keyboard or even a Bluetooth wireless keyboard, may be too small to access efficiently. Fine motor skills may be challenged by the size of the icons.

Using a third party keyboard, such as SuperKeys, provides a more accessible option for typing on the iPad. It is an iOS app available in the App Store for $12.99, offering a larger keyboard, making it visually more accessible. A unique feature of this app takes the traditional 30 icons on the keyboard and puts them into 7 large cluster keys. Tap the cluster that contains the letter you want and then it enlarges that cluster.  You can then select your letter, but it is now much larger in size and view.

In addition, it has an extensive word prediction feature that displays predicted words as enlarged buttons, as well.  One-touch, customized shortcuts, can be created with phrases or full names to help reduce keystrokes.

Once you download the app from the App Store, go to SETTINGS, then KEYBOARD,  KEYBOARDS, ADD NEW KEYBOARD, and select SUPERKEYS from the list of Third Party Keyboards. When the keyboard comes up, tap the GLOBE icon to change keyboards.

To create Shortcuts, go to SETTINGS, GENERAL, KEYBOARD, TEXT REPLACEMENT, TAP + to add a new phrase or swipe left to delete one.

In the SuperKeys app itself, you can change the colors of the keyboard display to assist with vision.

This app provides many options for making keyboarding and typing a more functional mode for many students and users!

Nicole Weckherlin, OTR/L
Occupational Therapist
Team NF

NF Center Welcomes New Faculty Member

We are delighted to announce that Dr. Stephanie M. Morris has joined the faculty as an Assistant Professor in the Division of Pediatric Neurology at the Washington University School of Medicine. Dr. Morris has been caring for children and young adults with NF for the past several years, and has recently been appointed to the position of co-Director of the NF Clinical Program at St. Louis Children’s Hospital.

Dr. Morris received her pediatric neurology training at Washington University, where she served as the administrative chief resident. Following her residency, she was a clinical research fellow working with Dr. John Constantino (Chief, Child Psychiatry) and Dr. David Gutmann (Director, NF Center) to understand autism and developmental disabilities in children with NF1.

Nicole’s Nook: Summer Break!

As the school year is winding down, many students will soon find themselves with down time and unstructured days. While this may be a welcome change of pace, it is important to keep their bodies active and their minds stimulated. With summer approaching, take the opportunity for gross motor fun, sensory rich experiences and other learning activities. Be mindful of the use of technology, especially over the summer, as devices can become addicting and non-productive. Its use should be limited, as they won’t necessarily be needed to complete classroom or homework tasks.  However, when in use, provide educational options. Some app suggestions include:

  • Preschool Monkey Lunchbox
  • Endless Alphabet
  • Endless Wordplay
  • Dexteria Jr.
  • Book Creator
  • SpellBoard
  • Sentence Maker
  • Bluster
  • Everyday Mathematics apps
  • Todo Math
  • Motion Math
  • Math Bingo
  • Little Things
  • Letter Reflex
  • Point of View
  • Doodle Find
  • Rush Hour
  • Puppet Pals
  • MeeGenius
  • Stack the States
  • Stack the Countries
  • Khan Academy
  • Brain Pop Jr.

So make the most of this summer by enjoying some down time but making memories and experiencing new adventures! Technology is a powerful tool and can be so beneficial when used in the appropriate ways, amounts and time.

Nicole Weckherlin, OTR/L
Occupational Therapist
Team NF

Patient Spotlight: Lexi’s Journey with NF1

Forward Strides 4NF: Walking for awareness, Racing towards a cure!  Forward Strides 4NF is a charity that I started in 2016 in honor of two very special people who both deal with Neurofibromatosis (NF) on a daily basis – my husband, Alex, and my daughter, Lexi.

Alex was diagnosed with Neurofibromatosis type 1 (NF1) when he was in the second grade.  NF1 caused some learning difficulties that he was able to overcome with the help of some wonderful teachers at St. John’s Lutheran School. After learning of his NF1, he had a team of incredible doctors in St. Louis who monitored his condition on an annual basis. Alex had some minor surgeries to remove some of the neurofibromas on his body. He feels very fortunate that he has been able to live a normal, happy life. He has a passion for the outdoors, and enjoys hunting and fishing.

Lexi was born with a plexiform tumor on the bottom of her left foot and a leg length discrepancy. As a result, Lexi currently wears leg braces and inserts in her shoes, as well as a lift on the bottom of her right shoe. Since the age of 5 months, she has had several MRI scans and routine eye exams. She has also had an ankle surgery, where they placed a plastic implant to help with the stability of her ankle, and two staples to slow down the growth of her ankle bone.

Lexi receives both physical and speech therapy each week to help with her low muscle tone and communication skills. She is a very strong, independent four-year-old who doesn’t allow NF1 to limit her daily activities. She loves to swim, has participated in tumbling, and is currently taking dance lessons. Even with her braces and shoe lifts, she keeps up with the other children to the best of her ability.

NF1 is a worrisome genetic disorder because of the “unknown.” No one individual is the same. You don’t know what to expect. Alex has overcome minor hurdles with his NF1, but we still face hurdles with him. Education is key with any genetic disorder. Staying abreast of all the research and medical advancements going on in the NF world is very important. We are very thankful for the progress that Lexi has made overcoming some obstacles that she has faced with already. We could not have done this without Dr. Gutmann and his amazing team. Since Lexi was 10 months old, she has been seeing Dr. Gutmann annually for her exams. We have also been so fortunate to have one of the best physical therapists, Dr. Courtney Dunn, who is also a part of the NF Center team.  Since she was 18 months old, Lexi has attended the Beat NF music motor therapy program offered through the Washington University NF Center.

Trying to reach out in the St. Louis city community to see who else is affected with NF1 is challenging. In 2015, I helped organize a Great Steps 4NF walk in conjunction with NF Midwest. After raising over $16,000 for Great Steps, I decided that I wanted to help raise money that stayed here in the St. Louis community. In 2016, Forward Strides 4NF was formed. For the past 2 years, we have hosted a 2-mile family fun walk in Valley Park, MO. These events occur at the end of September each year, and 100% of our proceeds go to the Washington University NF Center.

Our walks have definitely been a huge success. We raised $19,351.00 in 2016 and $18,679.00 in 2017. We have had over 200 registered walkers both years, with over 30 volunteers. Entertainment at the event included an inflatable slide and bounce house, bubble bus, face painting, Minnie Mouse and a clown that handed out balloon animals. In addition, the participants were greeted by Fred Bird and Louie at the finish line. We also hold a raffle, which included over 120 amazing items; this proved to be a HUGE attraction that alone generated over $4,300. Lastly, local restaurants donate beverages, snacks and food for all the participants after the walk is completed.

Trying to maintain a positive outlook given the diagnosis of NF1 is sometimes hard. There is a not a day that goes by when we don’t think about the NF community. However, we don’t let NF1 control our life, we try to run it ourselves. We keep up with our weekly therapy appointments, we are always learning more about NF1, and we stay up to date about new medical advancements. Importantly, we do our best to raise money to support the outstanding research at the Washington University NF Center. We are walking for awareness every day, and racing towards finding a cure in the future.

Mark your calendars for Saturday, September 29, 2018 for the Forward Strides 4NF Walk. Join our Facebook group as well: Forward Strides 4NF to keep up with quarterly fundraising events and updates regarding the walk.

-Written by Gina Wilburn (Mom)