Blog Post #3

Dear Friends of NF Tennessee,

            We hope you all are safe and sound. It is a strange world right now trying to learn how to deal with the coronavirus. It may seem a little remote if there has not been anyone sick that you know, but it sure has the potential spread quickly and cause serious illness. What I have seen at Vanderbilt is that every person who comes in the building, visitor, patient or employee, is screened for fever, cough or other signs of infection at the door. Many entry ways are closed. Patients can have only one visitor, and no visitors under the age of 16. The virus is being taken very seriously there, and you know in your own communities with schools out and stores closed, that it is being taken very seriously all over. So, we encourage you to be very safe, don’t go out if you don’t have to, wash your hands a lot, and try to keep a safe distance from people.

            Fortunately, NF1 and NF2 do not typically increase the risk of viral infections or alter the immune system. There are few NF related problems that require steroids for treatment or that require chemotherapy and can result in a lower immune system.  People with asthma and other lungs problems also have an added concern, but again, those issues are not the main ones related to NF. The national NF organizations are paying a lot of attention to this issue also and you can read more from the Children’s Tumor Foundation (see https://www.ctf.org/news/coronavirus-covid-19-update), and the NF Network (see https://www.nfnetwork.org/pages-news/health-and-safety-first-nf-network-and-covid-19-policy/?lang=en).

            As the result of the need to limit groups and crowds a number of NF related events have been postponed. The Vanderbilt NF Patient and Family Symposium scheduled for April 18, 2020 has been postponed with a new date to be determined. Likewise, the Music City Rock n Roll Marathon has been postponed. May is NF Awareness month, but it is uncertain if the local events like lighting the downtown bridge will be able to take place. Awarding NF camp scholarships to Camp New Friends in Virginia was on our list of to-do’s for this Summer. That is on hold too, but check it out and keep watching for announcements on it.  (www.brainycamps.com/camps/neurofibromatosis.html)

           There are some events a little further from now that we hope will stay as scheduled. Of particular note is the Family and Friends Fun Day at the Nashville Zoo, September 12, 2020. This is being organized by Nancy Carver and friends, and looks like a lot of fun. Keep on the lookout for more information on our Facebook page and website.

            Lots of small groups are having online virtual meetings and there may be people in our community who would be interested in that type of activity.  There are also a group of NF kids and families who are home schooled, and they may be a great source of ideas for temporary home schoolers. If you can think of more ways to help each other or help people outside of the NF community, now is an excellent time to step up and let people know your ideas.

            Another new program that we would like to announce is our NF Tennessee Laptop Program. Originally conceived as a way to encourage students with NF to undertake education beyond high school or to develop talents and activities beyond school, this program has a new incentive in this time of social distancing. Our goal is to provide laptop computers as grants to two people in the NF community who have special plans that this would help to accomplish.  We want to know how a laptop would help you to develop and achieve new goals. Instructions on how to apply to the NF Tennessee Laptop Program are posted on our website (click here: NF Tennessee Laptop Program). You can also contact us for instructions at contact@nftennessee.org.

              We at NF Tennessee are in the process of putting together a Calendar of Events for the next 6 months, and this is another way you can help. If you know of any events that would be of interest to the NF community please let us know so it can be added and posted on our Facebook page.  You can send in your events to contact@nftennessee.org.

 

Be safe,

Paul Moots, NF Tennessee

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