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Neurofibromatosis Midwest

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“Mom found NF Midwest, she calls them our life ring and for good reason, they saved us in more ways than they or anyone else could imagine. We were no longer alone. They sent us information, talked to us gave us a breath when everyone else seemed to have taken it away. Trust me when I say my NF is much easier with them in my corner. ”
-Myshell
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“..we reminded ourselves to not get overwhelmed by the info and just to take it all in stride as much as we can. I think when it’s all new to you, it all sounds so scary. Which is why it was so nice to meet other families with happy kids and adults with NF. ”
-Sue
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“I received both of your packets in the mail yesterday and I wanted to say THANK YOU! The NF packet provided me with so much information I cannot thank you enough. When we got his diagnosis in November we had never even heard of NF so this has all been a bit of a whirlwind for us. Thank you for providing me with the tools to pass along to his teacher and my family! ”
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“Thanks for giving me information to guide me in the right direction. I can do this because you have given me the tools to get started. Other websites send me in circles leaving me with more questions than I began with. So once again THANK YOU FOR CARING.” – S.E. Age 29
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New Study Invite - Zoom based Clinical trial

The Integrated Brain Health Clinical and Research Program at Massachusetts General Hospital is recruiting adolescents (ages 12-17) for our Resiliency for NF study!

New Study Invite-Learn Stress Management Skills and Meet Other Teens

Posted By Paul J LeBlanc, RN, BS, CCM | On May 11th, 2021

Online Harvard study to help teens learn Stress and Symptom Management Skills

NOTE: PLEASE CONTACT THE RESEARCHERS DIRECTLY TO PARTICIPATE-NF MIDWEST IS NOT REGISTERING PARTICIPANTS

The Integrated Brain Health Clinical and Research Program at Massachusetts General Hospital is recruiting adolescents (ages 12-17) for our Resiliency for NF study! This study will be performed via Zoom and you can participate from your own home.

We’re currently recruiting for a study targeting children aged 12-17 with NF. It’s quite similar to NF-Web, but it’s a live Zoom based intervention and is attuned to a younger audience.

We recognize that the present circumstances may be stressful, anxiety-inducing, and isolating. By being a part of our resiliency training program, you will be able to learn stress management skills and connect with other people who have NF— from the comfort of your own home!

Hear what previous participants have to say at https://www.youtube.com/watch?v=f3_FX9GFeiM

Please see our recruitment ads for more details, or contact our Study Coordinator, Nathan Stone Fishbein () or the Principle Investigator of our study, Ana-Maria Vranceanu, PhD () to get involved.

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The resources on this site should not be used as a substitute for professional medical care or advice on Neurofibromatosis. Users seeking information about a personal genetic disease, syndrome, or condition should consult with a qualified healthcare professional.