Mason Reiter of Livonia is an active 6-year-old boy who loves swimming, elephants and Star Wars.
But since infancy, he has suffered from an extremely rare genetic disease of the kidney and liver that causes the formation of painful kidney stones. Currently, the only available treatment for the disease, called primary hyperoxaluria, is a combined kidney and liver transplant, which can lead to severe complications.
“If you saw Mason, you wouldn't know he has a genetic disease,” said Alison R. De Noia, project manager of the Oxalosis & Hyperoxaluria Foundation. “Mason loves to run, jump and play with his friends. He always has a smile on his face when you meet him that will warm your heart.”
But when a stone passes, it causes him so much pain that he has fainted in the past. And doctors say Mason's kidney can crystallize and fail at any time, with no warning.
“No child should have to suffer this way,” De Noia said.
Mason's family members are hoping for a cure.
To that end, they will host the inaugural “Take the Challenge Walk for a Cure” in honor of Mason at 1 p.m. Sunday, Sept. 25, at Wayne County Parks' Nankin Mills in Westland.
“We need to A) raise dollars and B) raise awareness,” said Mason's mom, Nancy Reiter.
All proceeds will benefit the OHF, the only foundation in the world dedicated to finding a cure for hyperoxaluria. The OHF also funds the Hyperoxaluria Center at the Mayo Clinic, which treats Mason. “They are the specialists in this disease. We want to keep that center open,” Reiter said.
Reiter said awareness needs to be raised because the disease is so rare, health professionals at local hospitals don't know about it and don't know how to treat the complications that arise from it.
For example, Mason has been treated locally for pneumonia four times because of breathing problems. “He was on medication and the levels weren't correct,” his mother said.
Mason passed his first known kidney stone at age 15 months. But there was at least one time before that that his mother suspects he passed a stone. “He screamed to the point where he fainted,” she said. “He was in a walker. I had no idea; I thought maybe his finger was pinched.”
After Mason was diagnosed at age 2'ªø1‚-2, doctors put him on a low-oxalate diet, which means avoiding foods like chocolate, and ordered him to drink two liters of fluid a day. He goes for ultrasounds every four months and blood draws about every eight weeks.
“The scary part of this disease is dialysis doesn't work. The kidney actually crystallizes,” Reiter said, explaining that patients with Mason's disease produce large levels of oxalate because of a missing liver enzyme.
“We hope with increased fluids, we can keep the kidney working,” she said, adding Mason already has reduced kidney function. She said doctors have told them they may not have any advance warning of kidney failure. “He could get the flu at school and if it dehydrates, he could go into failure.”
According to De Noia, all patients with primary hyperoxaluria have kidney stones, 50 percent have kidney failure by age 15 and 80 percent have kidney failure by age 30.
2011年7月4日星期一
‘Bigger and hotter’ but unchanging
For a rookie watcher, Jeff Smith picked the ideal spot — on the shady side of Peachtree Battle, seated on a brick pillar. Then again, he did have some feel for the AJC Peachtree Road Race, having run the event 20 or so times.
But not on July 4, 2011. Smith’s foot had been hurting, and he was a spectator at the 2 1/2-mile mark awaiting his wife and his 12-year-old daughter, who were running/walking the Peachtree. And already Smith, an Atlantan since 1988 who’s a technology manager, had seen something new.
“Those guys up front,” he said. “They really run fast.”
Such is the scope of the Peachtree that you can run the race and see a couple hundred thousand folks along the way without ever espying the elite runners, who start first and are long gone by the time the masses begin their trek. “Those guys finished 40 minutes ago,” Smith said, and still the 42nd Peachtree was in its nascent stages.
The massive race grew even bigger this year, growing to 60,000 participants. Think of this way: If you took everyone in a sold-out Turner Field — counting Braves and umpires and ushers, too — and arrayed them in rows in front of Lenox Mall, you still wouldn’t quite approximate this elephantine event.
“If it gets much bigger,” Smith said, “it’ll turn into a big walk.”
Not that he was complaining. Smith was having a fine time watching the runners and his young son was enjoying himself leaping at a tree branch. For all that the Fourth of July in Atlanta, Ga., entails — runners and watchers and dogs and crazy costumes and blaring music and the army of volunteers and even a fighter-jet flyover this year — griping doesn’t register. “You notice that nobody is upset,” Smith said. “Everybody’s in a good mood. All these people are in good spirits.”
It was hotter and more humid this Peachtree, and the good-spirited participants were sweating harder than usual after 2 1/2 miles. “And they haven’t gotten to the hill [in front of Piedmont Hospital] yet,” Smith said. But still: Over its four-plus decades of existence, this signature Atlanta event has proved indestructible.
Why, Smith was asked, is that so? Why is the Peachtree such a humongous deal?
“People are always looking for ways to celebrate the Fourth,” he said. “I’ll see people at the Peachtree that I only see once a year.”
Not far from Smith’s perch sat Jean Ingram and Blanche Roberts, sisters-in-law from Sharpsburg, Ga. They used to park themselves in front of the big water oak at Peachtree Battle, but a few years ago they scooted up the street because the tree’s roots grew.
When last this correspondent encountered Ingram and Roberts, the year was 2002 and they were accompanied by two of Ingram’s grandchildren, the younger of them in a stroller. On this day those grandchildren — Taylor, 19, and Tiffany, 13 — were running the race. As ever, so was Ferma Ingram, the 73-year-old husband of Jean and brother of Blanche.
“It’s bigger and hotter,” Roberts said, speaking of this installment of the Peachtree.
A few updates: Since 2002, Ingram has retired as postmaster of Sharpsburg and Roberts from her job as a teacher. Their Peachtree ritual, however, hasn’t changed: They left home at 5:30 a.m., were in place by 6 and came wearing red, white and blue. (Although Ingram’s sequined vistor of years past had, alas, fallen apart; it has been replaced by a “Peachtree Road Race Spectator” visor.)
Afterward the family — some 32 members were expected this year — would convene at Ingram’s house for the staple grilling-out. As for her indefatigible husband, who was running the 42nd Peachtree at age 73, Ingram said: “He’s had cancer; he’s had open-heart surgery.”
“About ready for brain surgery,” said Roberts of her brother.
“One year he ran with a kidney stone,” Ingram said. “Another year he ran with a cracked rib. After his open-heart surgery, we had someone run with him to make sure he didn’t fall over.”
Let the record reflect that Ferma Ingram and the other five members of the Ingram/Roberts running party — each of their names were pasted in glitter on a poster mounted on a wall — made the 6.2 miles without wilting Monday. “They’re still coming into the house,” said Ingram, speaking by phone from Sharspburg shortly after noon.
Earlier, someone had wondered when big becomes too big. Not just yet, came the sisters-in-law’s considered verdict. Said Ingram: “They organize it so well.”
Said Roberts: “Sixty thousand is a good number.”
But not on July 4, 2011. Smith’s foot had been hurting, and he was a spectator at the 2 1/2-mile mark awaiting his wife and his 12-year-old daughter, who were running/walking the Peachtree. And already Smith, an Atlantan since 1988 who’s a technology manager, had seen something new.
“Those guys up front,” he said. “They really run fast.”
Such is the scope of the Peachtree that you can run the race and see a couple hundred thousand folks along the way without ever espying the elite runners, who start first and are long gone by the time the masses begin their trek. “Those guys finished 40 minutes ago,” Smith said, and still the 42nd Peachtree was in its nascent stages.
The massive race grew even bigger this year, growing to 60,000 participants. Think of this way: If you took everyone in a sold-out Turner Field — counting Braves and umpires and ushers, too — and arrayed them in rows in front of Lenox Mall, you still wouldn’t quite approximate this elephantine event.
“If it gets much bigger,” Smith said, “it’ll turn into a big walk.”
Not that he was complaining. Smith was having a fine time watching the runners and his young son was enjoying himself leaping at a tree branch. For all that the Fourth of July in Atlanta, Ga., entails — runners and watchers and dogs and crazy costumes and blaring music and the army of volunteers and even a fighter-jet flyover this year — griping doesn’t register. “You notice that nobody is upset,” Smith said. “Everybody’s in a good mood. All these people are in good spirits.”
It was hotter and more humid this Peachtree, and the good-spirited participants were sweating harder than usual after 2 1/2 miles. “And they haven’t gotten to the hill [in front of Piedmont Hospital] yet,” Smith said. But still: Over its four-plus decades of existence, this signature Atlanta event has proved indestructible.
Why, Smith was asked, is that so? Why is the Peachtree such a humongous deal?
“People are always looking for ways to celebrate the Fourth,” he said. “I’ll see people at the Peachtree that I only see once a year.”
Not far from Smith’s perch sat Jean Ingram and Blanche Roberts, sisters-in-law from Sharpsburg, Ga. They used to park themselves in front of the big water oak at Peachtree Battle, but a few years ago they scooted up the street because the tree’s roots grew.
When last this correspondent encountered Ingram and Roberts, the year was 2002 and they were accompanied by two of Ingram’s grandchildren, the younger of them in a stroller. On this day those grandchildren — Taylor, 19, and Tiffany, 13 — were running the race. As ever, so was Ferma Ingram, the 73-year-old husband of Jean and brother of Blanche.
“It’s bigger and hotter,” Roberts said, speaking of this installment of the Peachtree.
A few updates: Since 2002, Ingram has retired as postmaster of Sharpsburg and Roberts from her job as a teacher. Their Peachtree ritual, however, hasn’t changed: They left home at 5:30 a.m., were in place by 6 and came wearing red, white and blue. (Although Ingram’s sequined vistor of years past had, alas, fallen apart; it has been replaced by a “Peachtree Road Race Spectator” visor.)
Afterward the family — some 32 members were expected this year — would convene at Ingram’s house for the staple grilling-out. As for her indefatigible husband, who was running the 42nd Peachtree at age 73, Ingram said: “He’s had cancer; he’s had open-heart surgery.”
“About ready for brain surgery,” said Roberts of her brother.
“One year he ran with a kidney stone,” Ingram said. “Another year he ran with a cracked rib. After his open-heart surgery, we had someone run with him to make sure he didn’t fall over.”
Let the record reflect that Ferma Ingram and the other five members of the Ingram/Roberts running party — each of their names were pasted in glitter on a poster mounted on a wall — made the 6.2 miles without wilting Monday. “They’re still coming into the house,” said Ingram, speaking by phone from Sharspburg shortly after noon.
Earlier, someone had wondered when big becomes too big. Not just yet, came the sisters-in-law’s considered verdict. Said Ingram: “They organize it so well.”
Said Roberts: “Sixty thousand is a good number.”
2011年6月12日星期日
Sunday Thoughts: Press Conferences
Imagine you’re a new hardware manufacturer and you’re planning on going to E3 next year. Your venture capitalists, private investors and Mafia contacts have given you almost infinite funding for the big show, so you can really start things off with a bang. In fact you want things to go so well you’re going to hold a big press conference and show off just what you can do. How should you go about it?
Well you’re a hardware manufacturer so you probably want to get things off to a good start by showing off your console. First thing’s first, make sure you actually announce what you have is a console. Sure, you might have some really amazing tech that isn’t in the box itself but you really should show some kind of box, sphere, or floating holo-disk.
People like boxes, they can understand a box. It’s reassuring to know there’s something under your TV that’ll hum lightly and let you show off to all your friends. I mean that’s obviously what the box is all about really, showing off. Without that how will they know just how cool or cutting edge you are? By actually playing games on it? Please.
The other upside to showing the box is it lets people work out whether or not it’ll fit into their entertainment centre. They also need to know whether or not it’ll match their front room’s décor, and if it looks cool enough that they can put it on a beautifully lit pedestal in the centre of the room. Remember, it’s all about showing off.
You may have a cool controller, but it's the almost featureless box people want to see.
Next make sure you have an absolutely huge screen at your press conference. People can’t possibly be expected to see anything that’s not displayed on a screen at least fifty feet high. Remember the dimensions of your screen have absolutely no relation to the size of your venue, even if you’re somewhere fairly small the screen still needs to tower and vaguely intimidate those in attendance; if it’s not huge then the press will never learn to fear and respect your gigantic face.
The other reason a giant screen is a necessity is it lets you say things like “…and only our console has the power to make images so mindbogglingly massive.” This is, of course, hugely impressive. Never mind the fact that the consumers who will buy your console don’t actually have screens the size of a small building in their front rooms. It’s not your fault if your the people buying your console don’t have a giant screen to play games on, they just need to know that if they wanted to rent out a theatre and convert the back wall so it was entirely made of screen they could. If they’re not up to that then they’re clearly lazy. At least you tried to show them how games should really be played.
Now, let’s look at the people demonstrating your console. There’s two routes to go here. If you’ve got some kind of motion controller you need to get people who have no sense of shame and are annoying as possible. Make sure you’ve got a script so utterly cringe-worthy that your audience will want to actually hide under their chairs in embarrassment. At least some of your demonstrators should be children, and rather than actually talking about the game they should have some kind of banter that no-one who plays games outside of a press conference has ever partaken in.
On the other hand, if you’re showing off games that use a more traditional controller you’ll want to do things a bit differently. You still need two people on stage, one talking and one playing. The one playing the demo should be utterly stone-faced and clearly concentrating fiercely on not screwing up. At no point should it look like they’re actually having fun, you don’t want to push people’s expectations too high. If they look like they’re focusing so hard that some kind of psychic ability might actually reveal itself, then you’ve got it spot on; looking like they’re trying to pass a kidney stone is probably a little bit too far.
As for the person describing the demo they’ll want to talk over as much of the demo as possible, explaining exactly what’s going on. At no point must your audience be left to figure out what’s happening by actually looking at the screen, or be allowed to let the demo sink in. If that happens they might be able to work out what the game’s really about, rather than what you say it’s about.
If you suspect that even someone talking constantly isn’t going to be enough of a distraction, you’ll need to replace the person playing the demo with a celebrity who looks as awkward as is physically possible. This should distract the press and public from the content of your demo, as they wonder “What on earth is that dude doing on stage?”
Well you’re a hardware manufacturer so you probably want to get things off to a good start by showing off your console. First thing’s first, make sure you actually announce what you have is a console. Sure, you might have some really amazing tech that isn’t in the box itself but you really should show some kind of box, sphere, or floating holo-disk.
People like boxes, they can understand a box. It’s reassuring to know there’s something under your TV that’ll hum lightly and let you show off to all your friends. I mean that’s obviously what the box is all about really, showing off. Without that how will they know just how cool or cutting edge you are? By actually playing games on it? Please.
The other upside to showing the box is it lets people work out whether or not it’ll fit into their entertainment centre. They also need to know whether or not it’ll match their front room’s décor, and if it looks cool enough that they can put it on a beautifully lit pedestal in the centre of the room. Remember, it’s all about showing off.
You may have a cool controller, but it's the almost featureless box people want to see.
Next make sure you have an absolutely huge screen at your press conference. People can’t possibly be expected to see anything that’s not displayed on a screen at least fifty feet high. Remember the dimensions of your screen have absolutely no relation to the size of your venue, even if you’re somewhere fairly small the screen still needs to tower and vaguely intimidate those in attendance; if it’s not huge then the press will never learn to fear and respect your gigantic face.
The other reason a giant screen is a necessity is it lets you say things like “…and only our console has the power to make images so mindbogglingly massive.” This is, of course, hugely impressive. Never mind the fact that the consumers who will buy your console don’t actually have screens the size of a small building in their front rooms. It’s not your fault if your the people buying your console don’t have a giant screen to play games on, they just need to know that if they wanted to rent out a theatre and convert the back wall so it was entirely made of screen they could. If they’re not up to that then they’re clearly lazy. At least you tried to show them how games should really be played.
Now, let’s look at the people demonstrating your console. There’s two routes to go here. If you’ve got some kind of motion controller you need to get people who have no sense of shame and are annoying as possible. Make sure you’ve got a script so utterly cringe-worthy that your audience will want to actually hide under their chairs in embarrassment. At least some of your demonstrators should be children, and rather than actually talking about the game they should have some kind of banter that no-one who plays games outside of a press conference has ever partaken in.
On the other hand, if you’re showing off games that use a more traditional controller you’ll want to do things a bit differently. You still need two people on stage, one talking and one playing. The one playing the demo should be utterly stone-faced and clearly concentrating fiercely on not screwing up. At no point should it look like they’re actually having fun, you don’t want to push people’s expectations too high. If they look like they’re focusing so hard that some kind of psychic ability might actually reveal itself, then you’ve got it spot on; looking like they’re trying to pass a kidney stone is probably a little bit too far.
As for the person describing the demo they’ll want to talk over as much of the demo as possible, explaining exactly what’s going on. At no point must your audience be left to figure out what’s happening by actually looking at the screen, or be allowed to let the demo sink in. If that happens they might be able to work out what the game’s really about, rather than what you say it’s about.
If you suspect that even someone talking constantly isn’t going to be enough of a distraction, you’ll need to replace the person playing the demo with a celebrity who looks as awkward as is physically possible. This should distract the press and public from the content of your demo, as they wonder “What on earth is that dude doing on stage?”
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