Update On Below Post


Hi All The post that I just made wont work unless you have a subscription to the Washington Post. It is a reaaly great article. If you wnt to read it you can look the…

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Great Article. A Must Read


www. washingtonpost.com/local/what-will-come-of Autumn-a-girl-a-disfiguring-tumor-and-a-clinical-trial-that-offers-hope-2020/09/18dcdf0d4fa01-11ea-89e3-4b9efa36dc64_story.html  

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Update on Camp New Friends 2020


Hi All, Last week we received a letter thanking us for our donation to Camp New Friends – Brainy Camps. With the letter was a letter, which were all held virtually. Here are some highlights…

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New Children’s NF Clinic


https://www.clevelandjewishnews.com/news/briefs/akron-children-s-hospital-starts-multi-disciplinary-clinic-for-neurofibromatosis/article_1e82230_e6da-11ea-b613-1fdd263fcc36.html

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Interesting Article


  https://www.labroots.com/trending/cardiology/18205/neurofibromatosis-affects-heart-health

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Update on NF Drug


The FDA has only approved the NF-1 drug for children so far. NIH is conducting trials for adults. Further informationwill be posted.

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Next Zoom Meeting


We will be having our next Zoom Meeting in a couple of week. What topics do you want covered?

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NF Awareness Month


Just a reminder that May is NF Awareness Month. Please do what you can to bring awareness to NF.

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Corona Virus


Folks with NF are at no greater risk for either getting COVID-19 or becoming severely ill as a result of it than anyone else.  NF in and of itself is not a risk factor.  That said,…

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Corona Virus


The Corona Virus (COVID-19} has changed all our lives. At the current time we know of no more risks specific to the NF Community than the general population. Please take the precautions you feel are…

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