Jeannie Peeper has a very rare and puzzling condition, fibrodysplasia ossificans progressiva (FOP), in which her body grows extra bone material. She showed signs since birth, but was only diagnosed at age four.
The name meant nothing to Peeper’s parents—unsurprising, given that it is one of the rarest diseases in the world. One in 2 million people have it.
Peeper’s diagnosis meant that, over her lifetime, she would essentially develop a second skeleton. Within a few years, she would begin to grow new bones that would stretch across her body, some fusing to her original skeleton. Bone by bone, the disease would lock her into stillness. The Mayo doctors didn’t tell Peeper’s parents that. All they did say was that Peeper would not live long.
“Basically, my parents were told there was nothing that could be done,” Peeper told me in October. “They should just take me home and enjoy their time with me, because I would probably not live to be a teenager.”
The problem of rare diseases is that few resources are dedicated to fighting them. But Peeper took matters into her own hands and connected with a couple dozen other people worldwide who suffer from FOP. She interested medical researchers in her condition. And she's in her fifties now, confined to a wheelchair but still alive and still fighting for help for people with FOP. Read Peeper's story and learn what it's like to have such a rare and confounding genetic disease in an article by Carl Zimmer at the Atlantic. Link -via The Loom
When this zinger came up during a video shoot, Mom and Dad decided this short clip was the perfect way to announce the big news to family and friends. -via Daily Picks and Flicks
It's surprise guest after surprise guest on The Graham Norton Show! If you want to get straight to the music, you can skip the first two minutes, but if you're at work using headphones, try not to sing along too loudly. -via Daily of the Day
Vivid Sydney is an annual festival going on now through June 10th, featuring light shows, music, drama, and other performances in Sydney, Australia. This video shows parts of a light show called PLAY by Spinifex Group projected on the Sydney Opera House. The full 14-minute Spinifex show is also available to watch. You can see more video clips of the opening night of the festival at vimeo. -via reddit
Today, and every May 25th, is known as Towel Day. It's a geeky holiday set aside to celebrate the life and works of Douglas Adams, author of The Hitchhikers Guide to the Galaxy. The main thing is to take your towel with you. Oh, any towel will do, but if you want to have special towels for next year's Towel Day, you can get these embroidered hand towels from Etsy seller Heritage Embroidery. It's just one of the items from a long list of Towel Day products, memes, and art you'll see at The Daily Dot. Link
Rhett & Link have a song especially for those of you graduating from high school and looking forward to being adults in the real world. -via Daily of the Day
A classic skit. Some people have no idea how offensive they are until you turn it around on them. And the real kicker is that turning it around often doesn't even get the point across. -via Daily Picks and Flicks
Michal Krasnopolski's minimalist movie posters takes minimalism to another level. Each title is represented by a very simple shape that makes sense if you've seen the film, or sometimes it's a take on the title (such as North by Northwest).
The designs rigorously adhere to the same mold: a circle overlaid by two diagonals, all inscribed in a square. The structure seems stringent, but, as Krasnopolski found out, it could actually yield “plenty of possibilities.” His poster for the original Star Wars, for example, consists of a grey circle diametrically bisected by a single line and set on a black background. (Hint: it’s the Death Star.) A diagonal red line, partially dissolved at the bottom end, signifies the Man of Steel’s fiery takeoff into the sky in Superman. A dial of red tick marks, each more faded than the last, references the submarine radar screen from The Hunt for Red October.
Of course, you can take minimalism a little too far. I still don't "get" the posters for Pulp Fiction or Raiders of the Lost Ark. You can see all 22 of them at Fast Co. Design. Link
Memorial Day weekend is the unofficial beginning of summer, since many schools are out, pools are opening, employers are juggling everyone's vacations, and the weather is nice enough for a cookout. I hear there's a big car race Sunday as well. But let's not forget the original meaning of Memorial Day -to remember those who gave the last full measure in service to their country. If you're not familiar with the poppy symbol here, check out the story from the Veterans of Foreign Wars. But the world being the way it is (meaning "we love holidays") you don't have to wait until Monday for a holiday. Today is Towel Day! Don't forget to take your towel with you. And since you have a three-day weekend, why not catch up on everything that's been happening this week at Neatorama!
David Israel got some audience participation going with a personal post called The Toy You Can't Throw Out. You can add your favorites to the conversation anytime.
Our featured pet this week at the pet blog Lifestyles of the Cute and Cuddly was Steve the cat, sent in by Neatoramanaut Kate Nelson. Your cat or dog or other animal can be a featured pet on Lifestyles of the Cute and Cuddly, too! All you need to do is send us a picture.
We also one brainteaser from Uncle John's Bathroom Reader this week: Fun With Words. As ususal, the answers y'all came up with were more entertaining than the actual answer!
In the What Is It? game, we had an object that is an unknown. Rob at the What Is It? blog researched every guess and found no definitive answer. So we decided to select two winning funny answers! Pismonque said it is "an ingenious device to mechanically reproduce the sound of one hand clapping." That's good enough to win a t-shirt from the NeatoShop! And Joseph Francis said "You cast it like a fishing rod and it scratches the back of someone on the other side of the gymnasium. I forget what it's called." But he didn't specify a t-shirt. Check out the answers to the other mystery items of the week at the What Is It? blog.
The comments of the week are polar opposites. ChrisW responded to the headline Tourist Rescued After Dining on Iceberg by saying, "I had no idea dining on iceberg was dangerous. Perhaps romaine would be better." Ha! Then in the post about precious toys, ladybugs told a great story: "I have a Hawaiian rag doll that I've had since I was 2 months old. My mom & I flew to Oahu to meet up with dad while he was on R&R from the Vietnam war. It's where he got to meet me for the first time. I've had it 43 years and will never get rid of it. I keep the doll in my cedar chest." Thanks for sharing that with us!
Three weeks from tomorrow is Fathers Day. Don't wait until the last minute to find something really meaningful for your Dad (or other father figure)! Check out the selection of gifts at the NeatoShop, including the newest t-shirt designs so you'll have something surprising and unique to give.
Be extra careful if you're traveling this holiday weekend. My family is headed out on a road trip, and we have a daughter with a brand new learner's permit. Buckle your seatbelt and keep a safe distance!
In 2005, Jim Sheeler wrote a Pulitzer Prize-winning story about the return of 24-year-old 2nd Lt. James J. Cathey from Iraq. Cathey's coffin was delivered to his pregnant wife by American Airlines, escorted by a Marine who was his friend since boot camp. Todd Heisler of the Rocky Mountain News also won a Pulitzer for his photo series covering Cathey's homecoming and funeral. The photograph that sticks with us is the one of Katherine Cathey sleeping beside her husband's body one last time, as a Marine keeps watch the night before the funeral.
It is the one and only photo that makes me cry each time I see it. What brings the tears to my eyes is not just the bereaved young woman, but the Marine who stands behind her. In an earlier photo in the series, we see him building her a little nest of blankets on the air mattress. Sweet Lord, I cry just typing the words, the matter-of-fact tenderness is so overwhelming. So soldierly. But in this photo — the one that lives on and on online — he merely stands next to the coffin, watching over her. It is impossible to be unmoved by the juxtaposition of the eternal stone-faced warrior and the disheveled modern military wife-turned-widow, him rigid in his dress uniform, her on the floor in her blanket nest, wearing glasses and a baggy T-shirt, him nearly concealed by shadow while the pale blue light from the computer screen illuminates her like God’s own grace.
These are the stories and images that bring home the real cost of war, and the real reason we have Memorial Day. Link
I do not breath, yet I run. I do not eat, yet I sleep. I do not drink, yet I swim. I do not think, yet I grow. I cannot see you, but you see me every day. What am I?
The brainteaser above is reprinted from Uncle John's Curiously Compelling Bathroom Reader, a fantastic book by the Bathroom Readers' Institute. The 19th book in this fan-favorite series contain such gems like The Greatest Plane that Never Was, Forgotten Robot Milestones, Ancient Beauty Secrets, and more.
Since 1988, the Bathroom Reader Institute had published a series of popular books containing irresistible bits of trivia and obscure yet fascinating facts. If you like Neatorama, you'll love the Bathroom Reader Institute's books - go ahead and check 'em out!
