Forward Strides 4NF Committee Fundraises for the Washington University NF Center
Recently, the Forward Strides 4NF committee visited the Washington University NF Center to present a $20,000 check. 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). This year the committee celebrated their 5th anniversary with a Superhero theme, and hosted over 200 registered walkers, with more than 30 volunteers. Entertainment at the event included an obstacle course slide, music, food and beverages donated from local restaurants, as well as superhero mascots to cheer participants at the finish line. Additionally, both a raffle and silent auction, which included many 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.
Walk Family’s FuNFest Raises Money for NF Research
On November 27, 2019, 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, obstacle course, music, a live auction, and silent auction bidding.
This year’s fuNFest raised a remarkable $24,894.53, which will fund Gutmann Laboratory research initiatives aimed at developing personalized medicine approaches for people affected by NF. The Washington University NF Center extends its heartfelt gratitude to Amanda and Brian 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.
The NF Center Wraps Up a Successful Beat NF Fall Session!
The Washington University Neurofibromatosis (NF) Center, in collaboration with our partners at Jazz St. Louis and the St. Louis Children’s Hospital Foundation, recently completed the 2019 Beat NF Fall Session. Toddler participants enjoyed five weeks of a jazz music motor therapy curriculum utilizing jazz music and physical therapy to promote social, attention, and motor skills in toddlers with NF1, while also fostering healthy parent-child interactions, peer relationships, and jazz appreciation.
Together with Jazz St. Louis education staff, the Washington University NF Center has developed this one-of-a-kind therapy program that specifically focused on frequently delayed skills in young children with NF1. During each session, local jazz musicians play live music, while the children review social engagement rules as a group, learn about a “mystery instrument”, and engage in gross and fine motor therapy. Educators and musicians from Jazz St. Louis compose and play original music expressly written for these activities. In addition, Beat NF Team members carefully design each week’s program to work on improving particular social and motor delays in toddlers with NF1.
Please join us for the Spring 2020 Beat NF Session (March-April 2020, dates to be determined). For more information about Beat NF or upcoming events, please contact us at firstname.lastname@example.org.
– Jennifer Traber, NF Center Coordinator
NF Center Welcomes a New Staff Member: Erika Ramirez
The Washington University NF Center is delighted to welcome Mrs. Erika Ramirez in her new role of full-time Clinical Nurse Coordinator for the NF Clinical Program at St. Louis Children’s Hospital. Erika previously worked with Drs. Stephanie Morris and David Gutmann as a part-time nurse for our families, but has recently expanded her role to facilitate specialty scheduling and coordinate patient care planning, thus serving as a critical liaison for our families. Look for our upcoming website blog “Ask the NF Nurse” for more updates from Mrs. Ramirez.
One of my favorite, easy-to-use, kid friendly apps is SnapType, an app developed by an occupational therapy student. SnapType is free ($4.99 for the Pro version), and it allows you to easily type in answers to complete worksheets on the iPad. You can then print or share the worksheet as a PDF.
To use SnapType:
Download and open the app, select NEW DOCUMENT, select CAMERA
Take a picture of the worksheet
You can crop the photo by selecting the icon mid-center on the bottom of screen
Once done, select the CHECKMARK in lower right hand corner
It will prompt you to add/name the document (my suggestion is to use name/subject/date to help quickly identify documents)
Select the document you just named
Complete the worksheet by tapping on the screen where you want your answer to be. This will prompt the keyboard to come up. You can then type your answers in. At the top, you can move the guide left or right to adjust the size. You can also change colors by selecting the artist palette icon in the upper left corner. When you are done typing your answer, hit the keyboard icon on the keyboard in the lower right corner and the keyboard will disappear. To continue working on the worksheet, repeat the process and tap the screen where you want to put your next answer. Continue until the worksheet is complete.
Once done, you can SAVE it (upper left corner) or you can share it (icon in the upper right corner).
Select PDF. Here you have multiple options to print it, email it (it will attach as a PDF) or move it to Google Drive or Dropbox.
A few more tips for using SnapType:
When working on the worksheet, you can zoom in to work on just a portion of the page at a time, which will improve attention and is less visually overwhelming.
If you want to prepare ahead of time, you can take pictures of multiple worksheets and just save them in your “home” area.
You can also organize by folders:
Select NEW FOLDER and name
To move a document to a folder, select EDIT in upper right corner
Select the RED CIRCLE on the left of the document name
From here, select MOVE (you can also select RENAME, EDIT or DELETE)
Select FOLDER you want to move it to
I highly recommend at least downloading the free version and giving it a try. This app has made quite the difference for many students who struggle with handwriting and productivity in the classroom.
Visit the App Recommendations page for additional information about great classroom and productivity apps for your children, or view additional iPad resources on the St. Louis Children’s Hospital resource website.
Nicole Weckherlin, OTR/L, Occupational Therapist
NF Center Welcomes New Faculty Member: Amy Armstrong
The NF Clinical Care Program at St. Louis Children’s Hospital welcome Dr. Amy Armstrong to the Division of Pediatric Hematology and Oncology, where she will spearhead our NF1 clinical trials for plexiform neurofibromas. Dr. Armstrong received her medical degree from Virginia Commonwealth University. Following internship and residency in Pediatrics, she completed a fellowship in Pediatric Hematology and Oncology at the Ann & Robert H. Lurie Children’s Hospital of Chicago. In 2018, she was recruited to Riley Children’s Hospital as an Instructor in the Division of Pediatric Hematology/Oncology, where she began her work on NF1-related tumors. Dr. Armstrong brings expertise in developmental therapeutics and NF1 clinical trials.
The Dohlke Family Raises Money for NF Research
I’ve worked at the Louvre Salon in Fairview Heights for 18 years. Our salon supports many causes throughout the year, and every year, my Louvre family rallies around my family to help support NF. This year, we raised an amazing $1700 in support of the Washington University NF Center.
We met Dr. Gutmann when my son Garrett was diagnosed with NF1 in 2005. We were scared and overwhelmed. We knew nothing about Neurofibromatosis. Dr. Gutmann, and all of the staff of the Washington University NF Clinical Program at St. Louis Children’s Hospital, were so incredibly supportive. Every doctor, practitioner, and therapist have been so kind and supportive over the years, offering so many programs and answers to the myriad of questions we have had to this day. Garrett (and our whole family) have participated in the complementary care programs provided by the Washington University NF Center, including Club NF and Teen NF. Currently, Garrett volunteers whenever he can at the events offered by this amazing group of people.
When Garrett was about 7, Dr. Gutmann said to me (after I had a million confusing questions) “You are your child’s advocate, what is more important than that?” He went on to say “ Never settle for an answer you don’t understand, even from me”. That conversation changed my view of many things, not just for Garrett’s care, and made me dive forward with raising awareness about NF, and supporting these wonderful programs and staff in whatever way we could.
I can’t offer enough thanks to Dr. Stephanie Morris, Nurse Practitioner Anne Albers, and the countless therapists and support staff who have counseled me and my whole family, as well as treated Garrett for all of these years. We have been extremely blessed, and Garrett has been so fortunate to have minimal issues with his NF. We have met some really incredible families over the years, and we continue to support each other, whenever we can.
Every May and June, I ask my friends, family and all of our generous Louvre staff and clients, to dig in their pockets to support NF. We offer raffle baskets, pay for wearing jeans on weekend work days, and donate products, gift certificates and simply hand over their hard earned money for this great cause. The NF Center adds a few goodies every year to our baskets, too! I am so proud of my workplace and family. My husband Bill, always doing what we need, and my son Drew, who has been the most amazing and supportive big brother anyone could hope for! So, I proudly wear my button that says: Ask me about NF.
Nicole’s Nook: Summer 2019!
Summer time is here, and while it’s a welcome change of pace, many of our kiddos need structure, stimulation and challenge. Screen time is on the rise, making educational and enrichment opportunities more difficult to prioritize. Limits on screen time should be set, and when on devices, time should be spent on interactive, creative and educational apps vs. passively watching videos.
One summer activity that can have multiple benefits is to keep a journal. My Wonderful Days is an app that can house those journal entries in one place. This is a great way to work on those reading, spelling, writing and typing skills. You can add photos to your entries and even share them with others. Summer is such a fun time, and often students are highly motivated to share and elaborate on their experiences with others.
Other fun and educational apps include:
Park Math HD
Khan Academy for Kids
Toca Hair Salon
Shadow Puppet Edu
So enjoy the summer, but don’t let those learning opportunities pass you by!!
Nicole Weckherlin, OTR/L Occupational Therapist Team NF
Club NF at Top Golf!
On June 1, 2019, the Washington University NF Center in collaboration with the St. Louis Children’s Hospital Foundation hosted our June 2019 Club NF Event, at Top Golf, St. Louis! The program focused on building executive function skills, gross motor skills and social skills.
Club NF met at Top Golf, St. Louis in Chesterfield, MO. Children had the opportunity to work individually with Top Golf’s Director of Instruction, learning about golf swing, technique and correct posture. Additionally, the children developed their social skills by working cooperatively in groups, participating in golf games, and taking turns. Parents, children and Washington University NF Center staff were likewise impressed with the dedication of the Top Golf staff, who made sure to connect with every child individually, sharing their love and appreciation for golf.
We would like to extend a thank you to all of our Club NF families, their continued support make all of our Club NF events extremely successful.
May is NF Awareness Month!
May is NF Awareness Month, join the Washington University NF Center in raising awareness, and supporting education and research, throughout the Neurofibromatosis community.
FACTS ABOUT NEUROFIBROMATOSIS
A set of complex genetic disorders that affects almost every organ system
NF1 affects one of every 3,000 births
Occurs worldwide, and in both sexes, as well as all races and ethnic groups
Few effective treatments
In the Washington University Neurofibromatosis (NF) Center, clinicians and laboratory scientists work together to accelerate the pace of scientific discovery and its application to the care of individuals with NF.
To learn more visit our other web pages…