Brody Meaux is the 14-year-old son of Lake Charles residents Jimmy and JoAnn Meaux. Brody has the rare genetic disease MeCP2 duplication syndrome.
MeCP2 is a neurological condition that occurs almost entirely in males. Effects include moderate to severe intellectual disability, weak muscle tone, difficulties in eating, poor speech or lack of speech, seizures and other conditions.
Most children with the syndrome regress over time. By the time they reach their early 20s, respiratory infections are a cause of death for many.
Brody has already lost three uncles and a cousin to this harsh syndrome.
It’s not surprising that Brody is totally dependent on others for the demands of his everyday life.
While there’s no cure for the condition at present, relatives of those with MeCP2 can’t help but hope that one is on the way. Of course, the more funding that doctors who research the condition get, the sooner the cure will get here.
Brody will be part of a big upcoming fundraiser. The Brody’s Bunch Runs For Research 5K run and 1K walk will take place Saturday, Nov. 16 at 8 am in Iowa City Park.
All the money raised will go to research. The goal of the event — which coincides with Brody’s 15th birthday — is to raise $15,000.
If you’d like more info, visit 401project.com or RSRT.org or call 439-3684.
The ECD Global Alliance, a patient advocacy group, supports patients effected by Erdheim-Chester Disease (ECD) and members of their families.
The ECD Global Alliance is headquartered in DeRidder. The president of the board of directors and the co-founder of the nonprofit group, Kathy Brewer, was raised and lives in DeRidder. However, volunteers for and members of the alliance live around the world.
In less than five years, the group has grown to include 176 members in 26 countries.
One of the alliance’s objectives is to bring an awareness of ECD to this region.
ECD is a disease that’s life-threatening, debilitating and extremely rare — fewer than 500 cases have been documented. (It’s thought the disease is under-diagnosed.)
ECD isn’t currently classified; it’s not known whether it’s a cancer, immune disorder or what have you. With ECD, tissue in the body can become dense and fibrous. If the disease progresses far enough, it can result in organ failure.
Currently there’s no standard method of care for ECD. All treatment options are “off-label.”
The ECD Global Alliance works with patients and medical professionals around the world to raise awareness of the disease; make diagnosis of the illness more practical; improve patient and family support; support efforts to improve and standardize treatment; and, ultimately, discover a cure.
An NIH study of the disease is currently taking place at the Women and Children’s Hospital in Houston.
Visit erdheim-chester.org to learn more. There’s loads of info on this site.
Cajun Jam Session
You could probably get into a long and heated debate about which of the small towns north of Lafayette comes closest to being a center for Cajun music. One of the towns that will always figure in the debate is Eunice.
If you want to hear some of the Eunice brand of Cajun music, you might want to travel to the Cajun Jam Session being held every Wednesday night, 6-9 pm, at Ruby’s Restaurant and Courtyard at 123 South 2nd St.
Fred Charlie produces this affair. You can’t bring your own amps, but you can plug into Ruby’s system. If you play Cajun music, bring your instrument and find a place. If you just want to listen, the Cajun food will be there for you.
Those who’d like to make a day of it may want to know that Ruby’s starts serving breakfast at 6 am. The restaurant offers the traditional daily Cajun plate lunch.
Need more info? Call 550-7665.
N.O. During Occupation
Before the Civil War, New Orleans was the biggest and most influential city in the U.S. South. It was occupied by Federal troops in April 1862. The occupation actually spared New Orleans from the devastation that wracked much of the south. Still, between rationing and arguments about the war, there was adversity in the Port City.
A new exhibit on life during occupation will run at The Historic New Orleans Collection at 533 Royal St., Tuesday-Saturday, 9:30 am-4:30 pm and Sunday 10:30 am-4:30 pm. “Occupy New Orleans! Voices from the Civil War” is free to the public. It will run through March 9.
Those who visit will be able to “experience daily life during the war,” says curator Jessica Dorman.
On display will be correspondence, journals, diaries and recordings of letters of those who lived through the time. Visitors can see the war drawings of William Waud; a panoramic painting from the era of Farragut’s fleet taking New Orleans and remnants of a flag stolen from the U.S. mint — a theft for which the perpetrator was hanged.
If you’d like to know more, visit hnoc.org or call 504.523.4662.
‘Creepy On Almost Every Level’
Edwin Edwards’ new “reality TV” show is on the air and the reviews are in. They aren’t good. Even Variety, which never has an unkind word about anything, sliced and diced this program, which “TV Columnist” Brian Lowry called a “freak show.”
He delivered what will probably be the most devastating critique of the show when he wrote that it’s “creepy on almost every level.”
The funnies come fast and furious in Lowry’s review. I can’t do better than to quote them. Lowry begins by stating the show is “just your typical romance between an 86-year-old politician/ex-con and his 35-year-old bride.” Fair enough.
That raises the question as to how such a show came into being; what was the motivation for it? Lowry says the explanation is that A&E “couldn’t reanimate Anna Nicole Smith, so it goes for the next best thing.” (Apparently, throughout the show Edwards calls Trina a “gold digger.” Ha ha.)
Trina, the 35-year-old stand-in for Smith, is, says Lowry, “blond and buxom,” and “would be the ostensible star of the show if Edwin wasn’t so much more interesting.”
What’s goes on in the show? Lowry suggests that it’s more interesting to consider what’s not in it. “The producers,” he writes, “conveniently skip all the obvious questions, starting with how the hell this whole relationship happened.” Questions that go unexplored include those of why 35-year-old Trina would be attracted to 86-year-old Edwards and why Edwards spent time in jail.
Lowry says that at one point in the program, when Edwards says, “you’re only as young as the woman you feel,” the line “sounds as rehearsed as a stump speech.” He’s right. Lagniappe quoted Edwards as saying this very thing in public right after he got out of jail.
Instead of exploring the big and obvious questions, the show develops its first two major plot points: (1) Trina hopes to pop out of a cake for her hubby’s birthday, and (2) the happy couple plans a child. That sounds about as interesting as a rerun of the Brady Bunch. And while Lowry doesn’t mention that show, he does say that “The Governor’s Wife heads straight for sitcom A and B plots.”
Trouble is, I guess, he doesn’t find it real amusing. “Even all that Cajun cooking doesn’t make Edwin’s dish or her rusty old spoon any more appetizing,” writes Lowry.
After pointing out that no viewers will identify with the program’s stars, he says The Governor’s Wife is, effectively, “Extreme Trophy Wife.” To extrapolate from that, it’s reasonable to conjecture that people will watch the show because it and the act of watching it are just perverse enough to be titillating (for some, anyway).
Speaking of that, the same issue of Variety reported that an episode of the show about the duck people — I forget what it’s called — just drew an audience of 10 million.
The Grand Old News
A fair number of people think there’s been a significant degree of slippage in U.S. media in recent years; perhaps even recent decades.
If this hypothesis were correct, we’d expect to see shallow, silly, slippery stories in the grand old bastions of established and respected media.
Bastions such as, say, the New Yorker.
On one day in October, The New Yorker ran these two headlines:
“Why Abraham Lincoln Liked Infographics”
“Looking Back At Space Invaders”
Just a little gloss on the first one: Abraham Lincoln neither liked nor disliked infographics. He knew as much about infographics as he did about Space Invaders. The Oxford Dictionary states that the term “infographics” was used for the first time in the 1960s. I’ve just learned that the term infographics is so new it still doesn’t appear in the Word spell check.
If we can’t rely on the grand old mainstays of media, we may have to turn to promotional emails to get our news. And wouldn’t you know it? In my latest batch of emails, I discovered an announcement of what is, in my appraisal, unquestionably the story of the millennium:
“Slash Re-brands His Image”
It sure is good to get my lunch hooks into some real news. Of course, by the time I’ve quit hearing about that story, I’ll probably be sick of it.
That Good? Really?
One recent office email promoted a holiday album with such a grand claim that it was all but impossible to credit it. The tagline read:
“A Holiday Album So Good, The Kardashians Are Using It On Their Show.”
“Oh, come on, now,” I can hear you saying. “Just how much do they think I’ll believe? Even Nat King Cole and Willie Nelson never put out a Christmas record THAT good.”
Hey, I’m with you. But just to be a sport, let’s see what this mythically great album is.
It’s Everyday Holidays by Elizabeth Chan. Who’s Elizabeth Chan? Well, the press release says the young Chan was the star of some TV show called the Failure Club. Chan has already written 300 holiday songs. No wonder folks are excited. And people thought Franz Schubert was a big deal.
I’d like to put in a request for a Christmas song about two cats, a stability ball, a set of hand towels and Augustus Gloop.
A few days ago, I saw a movie called Emma. Would you believe it lasted four hours? You couldn’t imagine what went on in that 4 hours. Here’s a brief rundown.
OK, Emma and Frank and Jane all live in the same place but Frank and Jane go away when they’re kids. Emma starts matchmaking and tells Harriet to say no to the farmer and yes to the preacher. Emma thinks the preacher likes Harriet but he likes her and she says no and Mr. Knightley is really, really mad.
So Frank and Jane come back at the same time and Frank acts like he likes Emma but doesn’t and she can’t decide and he leaves and Jane too and then they find out Frank and Jane were really engaged and Emma decides Knightley should marry her and he proposes.
Hose me Agnes! Can you believe that? Wow, back then people did nothing but talk about who wound up with who and who was going to wind up with who and who wouldn’t wind up with who. Boy, have things changed!