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Tuesday, May 4, 2021

Neurofibromatosis Awareness Month #EndNF #JacquieRogers #BumpsRbeautiful


May is Neurofibromatosis Awareness Month!
#BumpsRBeautiful #EndNF

There's lots going on at Windy Hill Farm aka Camp Rogers.  It's planting season here in southwest Idaho and we have lots of drippers to install, new raised beds to assemble, place, and fill (who knew dirt could be so expensive?), seeds to plant, starts to buy and plant--all while keeping the cold crops watered and alive.

And, of course, May is Neurofibromatosis Awareness Month.  My daughter Mercedes Christesen has type 1 (NF1) and is very active in the Children's Tumor Foundation community to raise research money and awareness for this debilitating genetic disorder.  Eventually, she'll set up her own YouTube channel but for right now, I'm helping her make videos--doing her part to raise awareness.  Because...

Did you know that more children are born with NF than with multiple sclerosis and muscular dystrophy combined?  Yet how many of us in the general population have heard of NF?  And those of us who've heard of it, how many actually know what it is and how it affects people?  That's the subject of this video that Mercedes made.



(Blogger may very well mess with the aspect ratio, so click here to go to the direct link.) 

There is no cure or treatment for NF.  Mercedes has had many, many bumps (called neurofibromas--tumors that grow on nerve endings) removed.  Several have grown back with a vengeance.  These tumors are more than unsightly.  They're quite painful and also there's always the possibility that they'll become malignant.

I sponsor a readers' weekend at one of my very favorite places, Silver City, Idaho.  We call it Much Ado About Silver City.  You should come to it because we have LOADS of fun!  One of the events is the Team Hurricane Charity Auction to raise funds for neurofibromatosis research.  We have a crazy auctioneer, a crazier crowd, and an extremely fun venue.



Again, if blogger messes with the aspect ratio, click here for the direct link.  To contribute to the auction, email Mercedes at hurricanemercedes@yahoo.com or message her on Facebook.  For more information on the Silver City event, go to my website.

Other fun stuff: our family and Chelle Gluch and family visited Celebration Park near Melba, Idaho, to see the petroglyphs.






I have a really good video with Chelle showing and interpreting a few of the petroglyphs, which I'll upload within the week.  To see it and others, please subscribe to my YouTube channel.

Happy Reading!




If you're on Snapchat, friend me!  My handle is jacquierogers.  You can get videos of Sassy's latest updates there.  And goofy pictures of her scribe.

7 comments:

  1. You know how much I admire Mercedes and your family. Sorry I'm unable to attend the Silver City weekend. With you there, it can only be a wonderful event with a lot of laughs.

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    1. We'll just have to bring some fun to you! Hope all's well at Fort Clemmons.

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  2. Thank you Caroline, I appreciate you.

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  3. Thank you for all the help with my quest.

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  4. Blessings to your daughter. My youngest daughter has EDS, another genetic condition that can wreak havoc internally and externally.

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    1. Blessings to your daughter as well. I had to look up EDS--it's doubly frustrating when people don't understand a disorder and make judgments with no or wrong knowledge.

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