Washington University Neurofibromatosis (NF) Center

Over the weekend, our teenagers who are part of Totally TEEN had the opportunity to volunteer at Open Door Animal Sanctuary! We love showing them that volunteering can be fun!

Hey parents, don't forget to register your kiddo for Club NF Cooking October 5th! Please register using this link --> https://www.eventcreate.com/e/club-nf-cooking

Check it out!!

The guest in this episode is Dr. David Gutmann, a leading neurologist specializing in Neurofibromatosis Type 1 (NF1). The conversation explores Dr. Gutmann's research on the NF1 protein neurofibromin and its role in regulating cell signaling pathways. They also discuss various neurological issues associated with NF1, current and future treatments, and the application of AI and machine learning in predicting disease risk. Listen here... https://decodingnf.com/4

And that’s a wrap on Camp NF for our K - 4th graders! We worked on handwriting, social skills, following directions, and motor coordination. As you can see, the kiddos absolutely LOVED it!

Next stop, 5th - 8th graders!

Hey parents!! Did you know that the NF Center hosts a FREE camp for your kiddos? We have two separate camps, one for kids in grades K - 4th and another for kids in grades 5th - 8th. Registration is filling up fast, so don't wait!

K - 4th Camp: https://www.eventcreate.com/e/campnf-k-4

5th - 8th Camp: https://www.eventcreate.com/e/camp-nf-grades-5-8

The 2nd Annual NF Family Day was an OVERWHELMING success! Not only did we see countless smiles and laughs, but we doubled our headcount from last year! Thank you for hosting us. For more information on Family Day and other events, please email [email protected]

If you haven't already registered, don't wait any longer! The countdown to NF Family Day 2024 has begun! Register here >>>https://www.eventcreate.com/e/nf-family-day

No, NF1 itself is not a form of cancer. However, people with NF1 have a higher chance of developing cancerous tumors. This is why we encourage you to see your NF1 doctor on an annual basis.

A huge congratulations to Dr. Angela Hirbe on her well deserved promotion to Associate Professor with Tenure!!

Dr. Angela Hirbe Promoted to Associate Professor with Tenure | Neurofibromatosis Center | Washington University in St. Louis Angela C. Hirbe, the Director of the Adult NF Clinical Program, was recently promoted to the rank of Associate Professor with tenure in the Division of ...

Hey families!! If you haven't heard, the NF Center is hosting its 2nd Annual NF Family Day for our patient families!! You won't want to miss it!

Register here --> https://www.eventcreate.com/e/nf-family-day

We have some pretty incredible NF families. For the past 8 years, a couple of our clinic families have hosted an annual fundraiser to raise money for NF research. Without families like this, research would not be where it is currently at. Thank you for all that you have done! 💙💚

Interested in organizing a fundraiser for research or therapy programming, you can too! Email [email protected] to find out more!

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Looking for a FREE therapy-based activity for your kiddo with NF1? Look no further! Join us Saturday, June 8th at Topgolf in Chesterfield, MO.

You can register here >>> https://www.eventcreate.com/e/club-nf-golfing

Thanks to the groundbreaking work by the Gutmann Lab at the Washington University NF Center, the NF Clinical Trials Consortium is looking to launch a trial to assess whether lamotrigine, an epilepsy drug, can prevent or delay tumor growth in children with NF1. You can read the full article here!

Epilepsy drug prevents brain tumors in mice with NF1 | Washington University School of Medicine in St. Louis Study lays groundwork for clinical trial aimed at preventing brain tumors in children with NF1

In most people, NF1 is not a life-threatening condition. However, there are rare situations where medical problems arising in people with NF1 can be serious. For example, people with NF1 and a plexiform neurofibroma may develop an uncommon cancer called a malignant peripheral nerve sheath tumor (MPNST). Although MPNSTs are rare, people who have an MPNST frequently pass away from it.

Come on out tomorrow! We’d love to see you there!

Did you know that we are celebrating 30 YEARS of NF at WashU?! You can read more about it here!



https://neurology.wustl.edu/washington-university-neurofibromatosis-center-celebrates-30-years-of-nf/?fbclid=IwAR2V-WN9skCC8JhTldKCVqNuS01Vi1zdnMBujqvpobT4MtL8WeDMg7FnsGg_aem_AZp3EgMI3T3kiEf4otaecMiTgBHfMzcEQW4vKlF7JeplzpLU5p61cWR9tIrFMbeuZ6mmD3v2Qu2RSm-ytBgdTE3B

Washington University Neurofibromatosis Center Celebrates 30 Years of NF | Neurology | Washington University in St. Louis Featured Research People Washington University Neurofibromatosis Center Celebrates 30 Years of NF By Katherine • February 21, 2024February 21, 2024 One of the largest and most comprehensive centers in the world specializing in the care of people with Neurofibromatosis (NF) and related disorders .....

Thank you for hosting this past Saturday! We worked on fine motor and social skills in such a fun way!

3 weeks away until our next Club NF event at ! Register at https://www.eventcreate.com/e/club-nf-zoo

Today is !

Rare is strong.
Rare is many.
Rare is proud.

Join us for the upcoming Totally TEEN event at Schnucks Cooking School. Click here to register --> https://www.eventcreate.com/e/totally-teen-meal-prep

Mark your calendars for our upcoming events! For more information, please email [email protected].

You won't want to miss this survivor themed fundraising event - Forward Strides 4NF Walk! Bring the whole family and make it a family day!

Register today at GetMeRegistered.com/ForwardStrides4NFWalk

Each year, Marli and her family host a lemonade stand to help raise money for the NF Center. We are honored to have such an amazing family working diligently to support the work we do.

Closing out 2023 with our Club NF and Totally TEEN therapy groups! We all had a BLAST ice skating at Steinberg Skating Rink!

Happy Thanksgiving to you and your family!