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THANKS FOR THE WELCOME!

Jun 03, 2007 07:05pm (EST)

Share Community Coordinator here - reporting for duty!

Thank you all for the warm welcome and kind words. I appreciate the comments. I can't think of a community I adore more; I am really looking forward to serving Share and helping to maintain the kind of warm and supportive atmosphere that was there for me when I first arrived here in 2004.

Techno-geek at your service!

With warm sincerity,
Darcy

Posted by Darcy Milder | Comments: (5) | Permalink

DARCY: THANKS SO MUCH

May 31, 2007 01:43pm (EST)

You are such a wonderful person, and the March of Dimes is so very fortunate to have you as part of our family. Best wishes in this new endeavor.

Pam Education & Health Promotion Dept. March of Dimes

Posted by moderator | Comments: (0) | Permalink

ANNOUNCING OUR NEW SHARE YOUR STORY COMMUNITY COORDINATOR!

May 31, 2007 12:40pm (EST)

I’m thrilled to announce that Darcy Milder has accepted the March of Dimes staff position of Share Your Story Community Coordinator, reporting to me.

Before being hired for her new position, Darcy was a shining star as a March of Dimes volunteer. She started as a team captain for “Logan’s Angels” at the Quad Cities WalkAmerica in 2003. She then became their Ambassador Family in 2004. She was a Mission Speaker at numerous March of Dimes events in Iowa, such as Team Captain Kick-Offs, WalkAmerica, Chef’s Auction, a Baby Shower Luncheon, and the FCCLA state conference. She served as the Family Teams Chair for the Central Division as well as Chair of the State Chapter, before becoming the Iowa Mission Volunteer Liaison. She also served on the National Mission Volunteers Advisory Council.

Last year Darcy was approached by her chapter to write a Prematurity Curriculum to be utilized in the schools as an educational component to supplement human reproduction. As it turns out, Darcy had written curriculum before as a professor. Ideas were shot to Darcy and she took them and ran a full-out sprint! She included real life stories of preemies, and created interactive stations so the students would know what it was like to lug around an oxygen tank, figure out family finances with the costs of Prematurity, and what it might be like to be visually-impaired.

Darcy, of course, has also been a leading Share Your Story participant. Share Your Story and Darcy Milder have been intertwined from the beginning. As a stay at home mom who home-schools her three boys, she has found the online community to be an amazing support system where she has found a community, warm and compassionate, just like her. Darcy has posted over 7000 times, each touching a family in crisis, providing them a wealth of support and comfort.

Darcy’s participation has been multi-faceted, and always exceeds expectations when called upon. She has worked really hard to find ways for others to volunteer to help manage and maintain the quality of the site. In addition, she has often been asked to speak to March of Dimes staff around the country on why and how to promote the site in their communities.

In her new role, she will be a tremendous asset to me in providing technical assistance to you all as well as keeping the site on the cutting edge of community technology. She will assist me in marketing the site and will help provide logistical support for the annual Share Reunion held in October.

Please join me in welcoming Darcy!

- James

Posted by James SooHoo | Comments: (35) | Permalink

ASK OPRAH TO DO A SHOW ON PREMATURITY!

May 16, 2007 02:28pm (EST)

Hi everyone,

Just wanted to let you know that we have a proposal in to the producers of Oprah on doing a show on premature birth as a silent crisis. Can you imagine how much exposure on Oprah would do to raise awareness of prematurity in the United States?

Help us convince them that is indeed a show worth doing! Please write in at: Oprah show ideas.

Each email submission should be their own personal story of premature birth and suggest that they include a March of Dimes spokesperson because of our Prematurity Campaign.

Thanks much!

James Share Your Story Community Host

Posted by James SooHoo | Comments: (7) | Permalink

VOTE FOR SHARE!

Apr 11, 2007 10:06am (EST)

Hi everyone,

I’m pleased to announce that Share Your Story is up for a Net2Innovation Award. The project is now up for vote…so please cast yours! The Deadline is this Saturday!

You can do so by going to:

Projects/Vote

you’ll need to register on the site (it takes just two minutes). Then, you’ll need to pick at least 5 different projects. Make sure that SHARE is one of them!

You can find the full list at:

proposals

As an fyi…here is the link to our proposal: Share Your Story

Thanks much!

James

Posted by James SooHoo | Comments: (1) | Permalink

NETSQUARED

Apr 09, 2007 08:05am (EST)

Posted by James SooHoo | Comments: (0) | Permalink

WHERE IN THE WORLD ARE SHARE PARTICIPANTS?

Feb 17, 2007 11:24am (EST)

Here's a fun graphic. The below map shows where SHARE participants are located. Each dot represents someone who has logged in at least 50 times. While 91% of our users are located in the United States, SHARE reaches audiences around the world. Waving hello to our friends in Brazil!

Posted by James SooHoo | Comments: (10) | Permalink

THE ECONOMIC COST OF BIRTH DEFECTS IN THE UNITED STATES

Feb 09, 2007 11:37am (EST)

I came across this the other day with quotes from one of my colleagues...just thought I would share:

Birth Defects Cost U.S. Billions

By Serena Gordon HealthDay Reporter

FRIDAY, Jan. 26 (HealthDay News) -- The initial economic cost of having a baby born with a birth defect is enormous, ranging from several thousand dollars to several hundred thousand dollars per child.

So concludes a study published in the Jan. 19 issue of the U.S. Centers for Disease Control and Prevention's Morbidity and Mortality Weekly Report.

Researchers found that cardiovascular, gastrointestinal and musculoskeletal defects quickly run up the highest hospitalization bills.

"This study is a very important slice of the pie in terms of how expensive birth defects are," said Dr. Nancy Green, medical director of the March of Dimes. "It's important in terms of helping to define some of the costs associated with birth defects, and as a way to remind the public that birth defects are fairly common and are very expensive in terms of dollars -- and of heartache." As many as one in 33 babies born in the United States has a birth defect, according to the Agency for Healthcare Research and Quality (AHRQ). Birth defects are believed to generally occur during the first three months of pregnancy, often before a woman is even aware she is expecting.

The exact cause of many birth defects is unknown, but Green said they are presumed to occur as a complex interaction between the genetic predisposition of the fetus and "some sort of broadly defined environmental impact."

These defects can vary significantly in their severity. Some are mild. Others can cause the death of the baby soon after birth. The current study included 2003 hospital data on 35 selected birth defects. The birth defects were chosen based on whether or not the condition could be diagnosed at birth and if it was a permanent condition without intervention.

The conditions responsible for the most in-hospital deaths during the study period were diaphragmatic hernia (protrusion of the stomach through the diaphragm), renal agenesis (absence of one or both kidneys), trisomy 18 (a serious birth defect in which there are three copies of chromosome 18), and several congenital heart defects.

Costs varied widely, depending on the birth defect. Overall, the most expensive birth defect was an obstructive genitourinary defect, which resulted in almost $365 million in hospital charges. This defect, which is a narrowing or an absence of certain urinary tract structures, is fairly common. About 13,000 babies were born with it, according to the study. Individually, the cost to fix this problem is about $28,000.

Surgeries to correct defects of the heart were among the most costly per procedure, often running to more than $100,000 per child.

In all, birth defects lead to more than $2.5 billion a year in hospital costs alone, according to the study.

"It's interesting that someone took a broad look at the costs," said Dr. Dan Polk, a neonatologist with Children's Memorial Hospital in Chicago. But, he said, one problem with this information is that there's not much you can do to change these figures unless more money is invested in research to discover what causes these defects in the first place.

Until doctors understand the origins of specific birth defects, it's difficult to suggest prevention strategies, other than get early prenatal care and follow your doctor's advice for a healthy pregnancy.

"OK, so we know these defects cost money, but how do you prevent the spending of that money? Nothing's known on how to prevent these birth defects. They're there, and it is what it is. It's not a lifestyle issue or a mother's issue," said Polk. "Research defining the underlying causes might allow us to prevent, rather than try to treat, these birth defects."

Green agreed that more research is critical and pointed out that research has already led to the elimination of some birth defects. "In the 1960s, a lot of pregnant women got rubella. If that's acquired for the first time by a pregnant mom in the last trimester, it can cause congenital rubella syndrome. Thanks to standard routine vaccinations, we don't see that anymore," said Green.

Both Green and Polk recommended that all women of childbearing age make sure they get 400 micrograms of folic acid daily, because a deficiency in folic acid can lead to neural tube defects such as spina bifida in babies.

Green also suggested that if you can possibly plan your childbearing to occur before age 35, you can lower your risk of having a child with a birth defect.

"As a woman ages, there's a greater chance of having a pregnancy affected by chromosomal abnormalities," she said. Green also pointed out that the costs of birth defects hardly end with initial hospitalizations. The AHRQ recently released a report on the cost of birth defects and found that the average age of people being treated for birth defects was 17 years old, she said. "While many of these birth defects are treated in infancy, the impact of birth defects can be long-lasting and may extend into adulthood," Green noted.

To connect with parents of birth defects on the site, please join our discussion at Birth Defects, Diseases and Disorders.

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Posted by James SooHoo | Comments: (3) | Permalink

A TRIP TO HOLLAND

Feb 02, 2007 08:37am (EST)

A friend of mine who had two children both born with birth defects and both of whom, sadly, passed away sent this to me years ago. I remember how much it moved me then...so in case you've never read it before...

TO HOLLAND by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability-to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip-to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation the day finally arrives. You pack your bags and off you go. The stewardess comes in and says, "Welcome to Holland".

"Holland?" you say. "What do you mean, Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would have never met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Posted by James SooHoo | Comments: (5) | Permalink

CONGRESS APPROVES PREEMIE BILL!

Dec 11, 2006 02:37pm (EST)

Message from Dr. Jennifer L. Howse, President of the March of Dimes

Together we made a difference!

Dear Share Your Story Community,

I'm extremely pleased to report two major legislative victories for the March of Dimes, babies, families, and all Americans. Early in the morning on December 9th, Congress approved the PREEMIE Act (S. 707). The bill will now be sent to President Bush for his signature. This bill would not have passed without the hard work of volunteers and staff across the nation who reached out to their Senators and Congressional Representatives through personal visits, telephone calls, letters and emails urging swift approval of this initiative that sets the stage for increased federal support of prematurity related research and education.

Congress also approved a bill to extend temporarily federal support of the State Children's Health Insurance Program (SCHIP), thereby avoiding a funding shortfall projected to impact 17 states, putting over 600,000 infants and children at risk of losing their health insurance.

Your volunteer efforts for the March of Dimes have again proven successful in meeting the health needs of America's infants and children. Let's savor these significant legislative victories and also get ready for next year's agenda -- funding for the PREEMIE Act and long term reauthorization of SCHIP.

The Share Your Story community helped make it happen!

All the best for Happy Holidays,

Dr. Jennifer L. Howse President March of Dimes

Posted by James SooHoo | Comments: (0) | Permalink