Today is Rare Disease Day: Jeg’s Fight Against NPC
Today is Rare Disease Day. Which I didn't know was a thing. until Jenna Weets started posting about it a few years ago. Jenna is Jeg's mom. Jeg is a great kid that loves sports and racing and is battling Niemann Pick Disease Type C, which he was diagnosed with in 2017 when he was 7 years old.
This is a disease that very few people have even heard of...which is a blessing and a curse. A blessing because it is rare. But a curse, because since the numbers are lower than other diseases it gets put on the back burner....as you'll unfortunately see in the post below.
In a Facebook post, on the page: Jeg's Fight Against NPC they talked a little about what's going on:
A rare disease effects fewer than 1 in 2,000 people. NPC is an ultra rare disease effecting 1 in 100,000. It's also the 4 year anniversary of Jeg receiving cyclodextrin treatments.He's received somewhere around 100 spinal taps undergoing 2 years of those without anesthesia.
Our rare disease community took another blow last week when we received news that Europe is trending to not approve the other potential treatment for NPC which means it will most likely not be approved here.
We have no approved treatments and our kids lives are at jeopardy. We continue to fight for these treatments so our kids can remain stable while other medications can be discovered. Hopefully a cure.
Jeg just got another blow dealt when he tested positive for Coronavirus. But his numbers are back to good and we are super happy to hear that.
On this day, we spread the word about this rare disease in hopes to raise awareness to get proper long term treatment for Jeg and for others fighting alongside him & his amazing family.
What The Quad Cities Did For Fun in the 90's
Many times over the years, I'll be talking with friends about years gone by and I'll say "take me back".
Every generation goes through this, I assume. Looking back at a more simple time where responsibilities haven't set in and life seems fun. Opportunities are endless.
Let's go back to the 1990's to Wacky Waters, 50 Cent Beer night and revisit Mallards Mania!
Quad Cities Live Music Venues That Aren't Live Music Venues Anymore
We've compiled a quick list (by no means comprehensive) of venues in the Quad Cities that are no longer music venues but to us will ALWAYS hold a special place were we saw some great shows and made some incredible memories.
To many of us the live music scene wasn't just a concert here & there. It was an every weekend affair. And it didn't matter if it was a touring band or your buddy's band. We were going to be there with a beer in hand and scream along with guitars that were way too loud in a room that was improperly treated acoustically and make some bad decisions.