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Blog Post #12

Dear Friends of NF Tennessee,


Spring is here in full force, but with a little different flavor this year in Nashville and around Tennessee. Aftereffects of the severe winter cold can still be seen in the trees and bushes that are trying to recover. Aftereffects of the recent shooting in Nashville and protests that followed are still reverberating as well. That we share these things together, even if from different viewpoints, makes us more aware of what communities of all types mean to us and do for us in everyday life. We hope that NF Tennessee contributes to the communities that you live in, and provides valuable knowledge and support for you and the entire neurofibromatosis community.

One of the very practical ways we try to do that is to keep you aware of upcoming events of interest, and there are some really good ones underway and on the horizon.


May is NF Awareness Month worldwide, and there are a lot of ways to connect with your friends in the NF community near and far!


To Kick Off NF Awareness Month check out this NF Michigan and NF Northeast Educational Event about Social Skills with Dr. Tamar Green, M.D. and researchers from Stanford University:

Tuesday May 2 from 6:00-7:00 PM EST

Join members of NF Michigan and NF Northeast for a night of learning and conversation with Dr. Tamar Green, a physician and childhood psychologist in the BRIDGE Lab at Stanford! This is a chance to learn about current research and ask questions about NF1 and school/social skills. This event is geared toward adults with school-age children or kids/teens themselves.

Please RSVP if you plan to attend - this is a great way to kick off NF Awareness Month!

Meeting ID: 864 6441 5722

Passcode: MAYNF

Here's the link to the Facebook event: https://fb.me/e/VwiVETCx

Then take a look at the NF Tennessee Individual Grant Programs. There is the Laptop Giveaway Program which is what started it all. But now the options are wide open for whatever creative ideas you might have. Just come up with your own unique plan and tell us about it.

Our Laptop Giveaway Program is taking applications through May 10 with the awardees to be announced on World NF Awareness Day, May 17. The program has expanded its scope this year and includes grant support for other individual creative activities. We are highlighting art and music as prime examples of things you can do to enrich your life and those around you, and that we would love to support. We would also love to have you share your artistic endeavors with the NF community, and hope to fill the NF Tennessee website with your artwork.

Summer camp scholarships are another way we would love to support individuals in the NF community.


Laptop Giveaway / Individual Grant Application Forms:


On Wednesday, May 17 go out and find a way to build awareness and friendships that celebrate WORLD NF AWARENESS DAY!!!


After you have done all that, you might be hungry, so plan to attend our Annual NF Tennessee Picnic, including the very popular Dessert and Pie Contest, will take place on Saturday June 10, 2023 at Sevier Park on 12th Avenue South in Nashville from 11:30 AM to 3:00 PM.

The picnic will include great BBQ, great friends, games, a swing set and recreational play area, in a beautiful park, and with lots of desserts!!! Our good friend Skyler has promised that the weather will be excellent! And it is all free. So load up the car and come on down. And yes, you read that right, by popular demand, this year our contest will expand its scope to include all kinds of desserts.


If you or your doctors are looking for an educational experience the Children's Tumor Foundation NF Summit will take place June 21-24, 2023 in Scottsdale Arizona. This event brings patients and families together with researchers, clinicians, advocates, and supporters of the NF community. It is available virtually and we hope to have some representatives attend virtually for us. If you are interested please contact us. For more information see: Educational Events | Children's Tumor Foundation (ctf.org)


Then relax with some great music at the Chicago's 4th Annual NF Hope Concert to support the Neurofibromatosis Network. The concert will be on Sunday June 25, 2023 at 3:00 PM. For details see: 2023 Chicago's 4th Annual NF Hope® Concert - Neurofibromatosis Network (nfnetwork.org)


Spring has often included a special fundraising effort for NF Tennessee. However, this year the Big Payback Giving Day has been postponed while its sponsoring organization, the Community Foundation of Middle Tennessee, reviews their strategic plans. So, keep NF Tennessee in mind when you think about your own giving plans, but your past generosity is allowing us to expand our community support programs which is very exciting and for which we are very grateful. Our next organized fundraiser will be in conjunction with the Mightycause event in November.


Find a way to make NF Awareness Month special and let us know about it!!! And if you have events or other news for the neurofibromatosis community, we would love to add your items to the website.


All the best to you and yours for NF Awareness Month,

Paul Moots, for NF Tennessee


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