Posted in Charity, tagged Children, Conditions and Diseases, Epidermolysis Bullosa, fundraising run, Genetic disorder, Health, Rafi, rafi's run, riverside park, Skin on February 25, 2014 |
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Imagine having a child whose skin is so sensitive that even the clothing they wear rubbing against their skin can cause abrasions so severe they may never heal. Imagine if hugging your child causes them to feel pain. Imagine a child unable to avoid constant cuts, wounds and abrasions both externally and internally, and you can begin to imagine life with EB.
My friend Wendy’s friend, Rafaella Lily, was born with a severe form of a rare genetic disorder called Epidermolysis Bullosa (EB). Often referred to as “The worst disease you’ve never heard of,” EB is a devastating disorder which causes children’s skin to be so fragile that simply scratching an itch results in blisters and tears. Kids with EB are known as Butterfly Children. Their skin is as delicate as a butterfly’s wings.
Knowing this, a group of moms from Rafi’s preschool got together to make a difference. They began Rafi’s Run two years ago to raise money to fund research for a cure for EB, and thanks to the amazing generosity of family, friends, and businesses, have collected $400,000 for the cause. Every penny donated to Rafi’s Run goes directly to researchers who are already making amazing discoveries that will benefit not only kids with EB, but a host of other children with similar disorders and beyond. Information about Rafi, EB and EB research can all be found on their website: www.rafisrun.com. (more…)
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I have a problem with breast cancer campaigns about Loving Boobies. I think they trivialize a serious disease. I don’t love all the pink-i-fication of breast cancer — as if it’s not a real killer, just a fun, frilly, glamorous one.
That’s why I’m thrilled to tell you about Moon Walk NY. On July 20th, at 10pm, thousands of participants will take part in a power walk weaving their way through Manhattan’s most iconic neighborhoods and past famous landmarks, to bring awareness to Breast Cancer – no boobie language necessary. It’s a real commitment, this walk, The full loop is 26.2 miles and there will be a 13.1 mile option, (but you’ll have to choose your route in advance.) Either way, it’s a chance to walk with women not only doing good, but celebrating the successes of walks past: Since its inception 16 years ago in London, Walk The Walk has raised over $126 million dollars to support breast cancer research!!! Now, we can’t let those London-ers beat us, can we? (And lest you think it’s an oh-so-serious event, know this: there’s music, comedians, and more at the start…and a lot of participants walk in their bras!)
MoonWalk NYC’s goal is to raise $2 million dollars in one night, most of which be granted to Memorial Sloan-Kettering Cancer Center to help support the Breast Examination Center in Harlem, one of the first free screening facilities for breast cancer in the country where 80% of patients are uninsured but guaranteed support and guidance.
Walk the walk. Moonwalk NYC. And help bring prevention to thousands of women right here in NYC. Register by clicking here.
I was offered $75 to post this post – instead, I donated that amount right back to MoonWalk NYC.
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Sandy approaches – NASA pic (Photo credit: Locator)
I did not write the post I want you to read. But rather than saying I wish I had, I’ll say, I wish nobody had had to.
But Whitney Hess, founder of the blog Pleasure and Pain, (whom I didn’t know, but now will be following,) did write it. Because she saw that no one else had yet recognized the casualties of Hurricane Sandy in one central place.
It was hard work. Depressing, I’d bet. But she did it. And it is a reminder to us all that in this new-story-a-minute news cycle world we live in, the real stories are often untold, and always have lasting impact on those they touch. It’s a reminder of the humbling power of Mother Nature, and the ineffable sadness of life, when death comes too soon.
It’s called, simply The People Who Were Killed by Hurricane Sandy. Force yourself to read it all the way through. It’s hard to do. But it’s the least we can do.
If you want to do more, here are some reputable organizations that can help you help out:
When I start to forget about the Hurricane, when my life goes back to normal, and I start to sweat the small stuff again, I’m going to go back re-read the post. It’s a reminder of what was lost, and who will still – when the new-news-story of the day takes over – be grieving, and still need our help.
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Posted in Charity, tagged Beccarama, Emergency department, Emergency Rooms, Facebook, Infant, Julia Beck, Linda Grant, Mom Trends. SelfishMom, Pediatric Emergency Care, RBaby Foundation, Rebecca Martin, Sweden, Twitter, United States on May 5, 2012 |
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I know it’s hard to believe, but sometimes being a blogger brings things that are even better than swag: like the ability to participate in this year’s R Baby Foundation Gala. Before I say anything more, look at this:
Yes, that’s me, looking all earnest. But it’s kind of hard not to be earnest about this charity, because what they do, is work to make every emergency department in every hospital equipped to treat babies. You probably thought they already were. I did. But they aren’t. And how’s this fact? Babies born in the US are twice as likely to die than many other developed countries, including Sweden, Japan and Spain; the United States is ranked 36th among 196 nations. That is sad. And wrong.
But this is the statistic that really gets me: Children make up 27% of all emergency department (ED) visits, but only 6% of EDs in the U.S. have the necessary supplies for pediatric emergencies.
Six Percent. That means 94 percent of the time someone takes their baby to the hospital, that hospital is not fully equipped to take care of them. Not equipped to take care of a baby. Think about that. Scary.
So that’s why I’m involved with the organization, and with the Gala this coming week honoring my friendand tireless advocate Julia Beck. I’m joining other bloggers like Esti Berkowitz, Amy Oztan, Jessica Shyba, Melissa Chapman, Linda Grant, Nicole Feliciano, Rebecca Martin, Jennifer Perillo, Rebecca Levey and many more to help raise awareness about the charity…and the babies.
You can help, too. First, Sign the petition to improve pediatric care. Then,
Follow us on Twitter
Follow us on Facebook:
Grab our blogger badge: (it’s at the bottom of the home page)
Read and share our tips
Join us for our 5 star gala:
We’re talking babies here, people. And as someone who comes from a family where once, long ago, a baby did die, I know the lasting effect it has on a family. No family should have to deal with the loss of a child because a hospital isn’t prepared. Don’t just read this and shake your head. Click the links. Donate. Don’t let the babies down. -
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