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Neurofibromatosis Midwest

DEDICATED TO SUPPORT, EDUCATION AND HOPE!

Archive for the “Learn About Neurofibromatosis” Category

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Sign-Up for July 29 Neurofibromatosis Type 2 Webinar

The NF Network will be presenting an all new webinar on Hearing Preservation/Rehabilitation in Neurofibromatosis Type 2 on July 29th.

The presenter will be Derald E. Brackmann, MD, a Neurologist with House Clinic in Los Angeles.

Learn More

In case you’ve missed the webinars presented by various organizations over the years, we currently have eighteen available on NF Midwest’s website.

Read the Rest…

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be iNFormed – Seizures in Neurofibromatosis-1

Neurofibromatosis Midwest is pleased to release another article as part of our be iNFormed education initiative.

This short article covers seizures in neurofibromatosis type 1 and was was written for us by Nikolas Mata-Machado, MD the director of the NF Clinic at Loyola University in Chicago.

Check out the article here and be sure to check out Read the Rest…

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be iNFormed – Dr. Chang’s NF2 Symposium Transcript

At our annual symposium on October 25, 2014 Long-Sheng Chang, Phd from The Research Institute at Nationwide Children’s Hospital and Ohio State University College of Medicine presented on the Mutations and Biological Behavior of NF2-Associated Schwannomas and Meningiomas and Potential Therapies.

We have now uploaded a transcript from Dr. Chang’s presentation.

Transcript

 

Be sure to check Read the Rest…

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Volumetric Measurement of Tumors in Neurofibromatosis

At NF Midwest’s annual symposium in October 2014 we invited Eva Dombi, MD, from the National Cancer Institute to present information about how a newer technology called volumetric measurement is used to measure tumors in neurofibromatosis. The transcript from her presentation is now available online on our website.

What is Volumetric Read the Rest…

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be iNFormed – Transitioning to Adult Care

At our annual symposium on October 25, 2014 Dr. Parag Shah of Lurie Children’s Hospital and LaRabida Children’s Hospital spoke on Transitioning to Adult Care. Because neurofibromatosis is a lifelong and complicated disorder this is an especially important topic. It is critical that as children with NF become adults they are able to take responsibility for Read the Rest…

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be iNFormed – Gene Deletion in Neurofibromatosis-1

Neurofibromatosis Midwest is pleased to release another article as part of our be iNFormed education initiative.

This article covers whole gene deletion in neurofibromatosis type 1 and was was graciously written for us by Heather Radtke, MS, CGC, a genetic counselor from Children’s Hospital of Wisconsin.

Check out the article here and be sure to check out Read the Rest…