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IMPORTANT DAY IN THE FIGHT AGAINST PREMATURITY

Feb 08, 2012 08:00pm (EST)

Hey everyone,

I just wanted you to all know first that earlier today, U.S. Department of Health and Human Services Secretary Kathleen Sebelius announced the launch of Strong Start, a multi-faceted perinatal health campaign that includes a $40 million grant to prevent premature birth.

This public-private partnership will expand “Healthy Babies are Worth the Wait™” -- the March of Dimes public awareness campaign to let women and health care providers know that if a pregnancy is healthy, it is best to wait for labor to begin on its own, rather than scheduling an induction of labor or a cesarean section. The March of Dimes campaign includes television, online and print public service advertising, as well as patient education materials. Through Strong Start, these will be co-branded with the U.S. Department of Health and Human Services and the American Congress of Obstetricians and Gynecologists and distributed more widely. The March of Dimes also is working with hospitals to implement best practices that discourage early elective deliveries before at least 39 completed weeks of gestation.

very best,

James

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

ADVOCATING FOR OUR PREEMIES!

Nov 16, 2011 06:54pm (EST)

In honor of World Prematurity Day (November 17th) choose the Advocacy Road that is right for you...

Urge Your Members of Congress to Support the PREEMIE Reauthorization Act (S. 1440/ H.R. 2679)

Every year, 13 million infants are born too soon worldwide, including more than a half a million babies in the United States. November 17th is World Prematurity Day -- help reduce premature birth by calling your Members of Congress and urging them to cosponsor the PREEMIE Reauthorization Act of 2011 (S. 1440/ H.R. 2679).

In 2006, Congress passed the PREEMIE Act (P.L. 109-450), which expanded research and developed a public-private agenda aimed at reducing preterm labor and delivery. Since passage, the U.S. has seen a decline in preterm birth for three years in a row. The PREEMIE Act needs to be reauthorized in order to continue the important work that is under way. If enacted, the PREEMIE Reauthorization Act (S. 1440/ H.R. 2679) will enhance research, education and intervention activities aimed at improving pregnancy outcomes. Show your support for World Prematurity Day by calling your Members of Congress now and urging them to cosponsor the PREEMIE Reauthorization Act of 2011 (S. 1440/ H.R. 2679).

Click Here to Take Action!

Like the World Prematurity Facebook Page

Learn more about the March of Dimes Advocacy Efforts

Share your story through a short story or blog

Guest author Beth, NICUMomof1, shares her story and reminds us all how important our advocacy efforts are!

Advocating for your child is crucial for their growth and success. This is very true for the premature babies who were born too soon. Despite the research, there is no known cause for preterm labor and delivery in half of premature deliveries. I am one of those mothers.

My story began in December 2009 when I was just over 7 months pregnant and I found out I was pregnant with my daughter 3 months and 1 week after my dad passed away unexpectedly I started feeling bad and having pains in my back which I had throughout my pregnancy. My doctors’ office told me to lay on my side and drink plenty of water and looking back realized I should have insisted I be seen or gone to the ER. The pain went away and I resumed normal activities on December 30th. When I called the doctors’ office again, they insisted I came in. Upon examination, the doctor realized I was already 5 cm dilated and was told to go immediately the hospital. The Magnesium sulfate stopped my contractions nad I was sent home on complete bed rest on New Years Day. The morning of January 4th the pains returned and we went to the hospital at 3:27 am and Madeline Elizabeth was born at 5:13 at 33 weeks and 1 day gestation. She was a “large” 5 lb 5 oz 19 inch long preemie. That is how her story begins.

Today Maddie is 22 months old and achieving her milestones at a normal rate even when her age is adjusted. Her only delays have been with speech and language and beginning to walk. I have had to repeatedly fight for my child’s health needs in terms of receiving the Synegis shots for RSV as an infant to fighting for the insurance company to pay for her nebulizer for her Reactive Airway Disease. My daughter deserves the best and I will fight for what she needs.

Share how you will be honoring World Prematurity Day!

Posted by Akeelah's Mommy | Comments: (5) | Permalink

BECOMING MORE THAN JUST A SHARE *MEMBER*!

Jun 22, 2011 05:02pm (EST)

My life became intertwined with the March of Dimes 7 ½ years ago when my daughter was born at 25 weeks. I didn’t know anyone that had been through a premature birth and I felt completely alone. We managed to make our way through the NICU on our own but I always thought “There has to be a better way!”

When Kimberly turned 1, I happened across ShareYourStory.org and it felt like I found a home. I found a place where people knew my “language” and my questions were not only answered, but answered in the most positive, supportive ways. I went on to have another baby and Share was there for me more than ever. The people on this site kept me sane throughout a stressful pregnancy and I also found it healed my heart to help other people struggling with the same things.

I’ve never met a parent who has dealt with a premature birth or a birth defect that didn’t want to find a way to help out other families in their position. And Share gives you the perfect way to do that.

For those of you who are unaware, Share is completely volunteer run. We have a wonderful group of people who help us make sure that everyone who turns to Share gets the support they are seeking. Without this amazing team of people, Share would not be the wonderful site that it is. And we are always looking for even more volunteers who are dedicated to helping others navigate their “new normal”. The time commitment is not big and it mostly consists of responding to people’s posts and making sure we find the right people to help them out.

So if you have interest in becoming part of ShareYourStory.org, please let us know – we have positions that need to be filled and we’d love to have your help! You can contact me at Jackie_g@shareyourstory.org and I’ll give you more detail!

Thanks for helping Share become such a wonderful place,

Jackie

And here is a picture of our Leadership Committee from ShareUnion 2010! L to R: James, Stacy, Katie, Lauren, Julie, Jackie, Jessica, Tracy (missing from the photo are Ellen and Laura

)

IMG_4675

Posted by Jackie G | Comments: (8) | Permalink

PREEMIE CHAT TOMORROW

Mar 07, 2011 09:47pm (EST)

Hi everyone,

Beverly Robertson, the National Director of the Pregnancy & Newborn Health Education Center here at the March of Dimes is hosting a #preemiechat on Twitter on March 8th at 8pm EST.

In order to participate, all you need to do is join Twitter, put #preemiechat in the search field and follow along. Make sure to use the hashtag in your tweets so everybody can see them.

best,

james

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

JOINING TOGETHER: MARCH FOR BABIES 2011!!

Feb 16, 2011 08:01am (EST)

There is something amazing about joining so many stories together. One story by itself has power... has beauty, so many marching together is powerful... is beautiful.

Each story that marches in your walk will be different... and yet no one story will be more important than another. Different paths will bring us all together for one common cause: To ensure all babies are born healthy.

Each March for Babies is an opportunity. An opportunity to honor a little one that is missed dearly; celebrate a little one that is reaching milestones; or cheer a little one that is defying odds.

With each step, we honor, celebrate and cheer for a little one... and not to mention raise quite a few dimes in their name.

>>Side Note: Did you know Share Your Story members raise over $1 million each March for Babies Season!<<

As you join together with your family, friends, co-workers and strangers at your March for Babies event know that you are joining with your extended March of Dimes Share family near and far. Our stories together are a force to be wreckend with.

Prematurity, Birth Defects and Infant Loss watch out... The MoD Share Family is on the March!

Share your March for Babies Tips and Tricks with other Share Families

Start Your Family Team!

Previous March for Babies Blogs
2010: Helpless No More
2009: Angel Avenue

Posted by Akeelah's Mommy | Comments: (4) | Permalink

FDA APPROVAL OF 17P

Feb 08, 2011 09:57pm (EST)

Hi everyone,

I am happy to announce that the first-ever drug known to prevent some preterm births won market approval today from the Food and Drug Administration.

“For the first time, we have an FDA-approved treatment to offer women who have delivered a baby too soon, giving them hope that their next child will have a better chance at a healthy start in life,” said Alan Fleischman, MD, senior vice president and medical director of the March of Dimes. “Women who already have had a baby born prematurely should check with their health care provider to see if this treatment is appropriate for them. This treatment is not for everyone.”

The FDA approved hydroxyprogesterone caproate injection, commonly known as 17P, which is a synthetic form of a hormone produced during pregnancy. It will be marketed under the brand name Makena™ and given in weekly injections to pregnant women between 16 and 20 weeks gestation and continuing until 37 weeks gestation. The drug is approved for use by women pregnant with one baby and who already have a baby who was born before 37 weeks of pregnancy either because labor began on its own, without drugs or other methods, or because the membranes surrounding the baby ruptured too early.

Prior to today’s approval of Makena™, health care providers ordered prescriptions of 17P from compounding pharmacies; however, many eligible patients faced logistical and financial barriers to access. FDA approval means the drug now will be widely available only in specialty pharmacies and that there will be improved access of the drug through healthcare coverage.

A published study by the March of Dimes, the National Institutes for Health, and the Centers for Disease Control and Prevention, using data from 2002, estimated that if all women eligible for the progesterone injections received them, nearly 10,000 spontaneous premature births might be prevented each year.

17p-injection

Posted by James SooHoo | Comments: (14) | Permalink

PREMATURITY AWARENESS MONTH

Nov 11, 2010 08:01pm (EST)

In 2004, the night after Christmas, I sat in bed and waiting for my husband Keith to come home from his night shift. I had placed a wrapped booked entitled *So Your Going to Be a Dad* on his pillow. When he came home and unwrapped it I saw in his eyes at that moment the amazing future we had in store for us. We would be the perfect family with the perfect child. She would be in ballet, he in baseball. Our lives would be picture perfect.

I was blissfully happy being pregnant, teetering on the point of being obnoxious. Yes of course I had all the morning sickness and back pains but would never dare to complain. This was the beginning of our new lives together, what I have dreamed of since I was a child playing with my dolls, how could I complain?

On July 15th 2005 our world was shattered in an instant. My picture perfect delivery of my picture perfect baby was forever gone. My daughter Madison was born, 8 weeks premature. Madison fought for her life and won.

She is my miracle in every sense of the word. Madison still fights hard to this day, conquering what doctors told us she may never conquer. Madison cerebral palsy makes life more difficult for her but she proves to us every day what a fighter she is. She has instilled the value of *never to give up your fight* in us more than ever.

Nothing, not prematurity or her Cerebral Palsy will ever hold her back from having her *Picture Perfect* life. It may make it a little harder to get there but believe me she will.

It was because of the March of Dimes Madison had a fighting chance in the NICU. It was the March of dimes that helped equip the NICU with the lifesaving machines and medicines she needed to survive.

This Sunday, November 14, 2010 we are hosting our annual Precious Preemie Fashion Show at the Vanderbilt in Staten Island, New York. Our *Light a Little Star* program is our way to showcase our miracles. We watch as they strut their stuff to show the world just how far they have come and to honor the ones who are watching over us.

This is our favorite event. It is a room of filled with people touched by the mission of the March of Dimes. A room filled with friends and family brought together by a common bond and forever joined in friendship. It is a room filled with people who understand that prematurity, like polio, must become a thing of the past. Every year we watch each others peanuts grow. We watch and see how far they have come with each passing year. Our first fashion show Madison was still walking in her walker, and we were unsure if she ever would walk unassisted. Now my little Diva shakes her cooley as she does her best model walk down the runway.

This event has brought new families to our chapter as well. New moms who want to showcase their miracles or light a candle for their angels. Now that they have their foot in the door we are hoping they will also have a lifelong connection to the March of Dimes. We all have our reasons for supporting the March of Dimes. November is Prematurity Awareness Month. What better time than now to support such an amazing cause.

Posted by Akeelah's Mommy | Comments: (7) | Permalink

A SHARED ROAD MAP

Oct 22, 2010 02:19am (EST)

Share is a lifeline for so many, myself included. It’s a place where we’ve blogged open up our hearts and been met with understanding; a place we’ve made close friends. And that’s just the tip of the iceberg!

While most of us know how to find the blogs, did you know Share also has short stories, a café, instant messaging and March for Babies info? Yep, I know! It just keeps getting cooler.

Hang on to your hat folks! It’s your Share Your Story Road Map, with your very own dork guide... Lauren. If things still leave you scratchin’ your head leave your question in the comments and I’ll be sure to get it answered for ya.

Oh the places you can go...

No no no, we don’t host elder water aerobics in there. It’s the anything everything place on Share. A place to introduce yourself, a place to share recipes, get tech hints, and drum roll please... the Café! What is the Café you ask, um just a totally rockin’ place to hang out and laugh together about all things random.

This place most of us know well. It’s the always updated place where all the blogs and short stories are kept. Did ya know if you have a fav blog you can subscribe to it. Yep ya sure can! Right next to the author’s name it says “Subscribe” hit that button and you’ll find different ways to be kept in the loop when the blog is updated. Unfortunately there’s no button to poke someone who hasn’t updated in a long time to get on it. I know, we’ll have to work on that.

Aws jeah, the Parent to Parent, or P2P for short. Here ya got the gold mine of places to post for specific answers on feeding, medical conditions, cool spots to chat and the place to put post things when you’ve got no stinkin’ idea where it should go.
Some P2P highlights...

Preggo and Faaaaaaaaabulous: A thread for expectin’ mommies to hang and celebrate each week. (Found in the Pregnant? On Bed Rest, Trying Again? Folder)

Crazy with Kids: The title kinda says it all. A uber fun thread for all things kid related. Got a funny kid story- this is the place to Share it! (Found in the Day to Day Coping Folder).

Living a New Normal: Living with our little ones in our hearts is a rollercoaster of emotions. Chat with other mommies and get through the days together. (Found in the Families Who Have Lost a Baby folder).

This spot really gets hoppin’ as we gear up for ShareUnion and March for Babies season. It’s also got a spot to post in your state’s thread to find other parents or events in your neighborhood. I know, who knew!?

Instant Messaging

No, it’s not a subliminal message to go shop at Target... it means there’s a message waiting for you! Look over on your left.See Who’s Online... click one of their names.

Voila! See that box, that’s for instant messaging folks. The person you want to chat with isn’t online? No worries! Just click anyone’s name. When the box pops up you can change who it’s going to. Now go answer the instant message that’s been waiting there for you since July!

No seriously, that’s happened to people.

Got Questions? Post 'em in the comment box and I'll be sure to get to 'em!

Happy Sharing! Lauren

Common Headaches... Fixed Spell Check There are two ways to spell check your blogs. The first is you write your blog and post it. At the bottom of your post it says "edit". Click "edit". At the bottom it will give you the choice to "Check Spelling".

The second is when your write and misspell something sometimes depending on computer and browser a little red line will be under the word. Right click the word. A list of options will display- choose the one you want and Voila!

That Dang Too Big Attachment Made My Blog Disappear! Never fear... it's not gone gone. When you get that annoying message that says your attachment was too big do not click the "ok" box. It's not ok!

Click the "back" button on your browser. Your blog is still there safe and sound. But you do have to choose another smaller picture to upload in the place of the big one. Or you can copy your blog and paste it in a new window. I know... it's a bummer, but at least the whole blog isn't lost!

My Blog is One Big Paragraph! Your blog look like one big huge paragraph making it hard to read? No worries. When you're typing just be sure to hit the return key twice to make a space between your paragraphs. Wanna be extra fancy... type hr with < > around it. It will make a fancy bar like this....

Posted by Akeelah's Mommy | Comments: (11) | Permalink

ANOTHER SHAREUNION HAS COME AND GONE

Oct 07, 2010 04:37pm (EST)

So ShareUnion 2010 is over.

I think any of us who were there were sad to see the weekend end.

I know that it can be intimidating for someone to make that leap of faith and fly across the country to meet people they only know online. I know that at some point, you'll think “this is crazy!”, but I think anyone who has been to one can tell you that it is totally worth it. Here are some of the reasons why:

You won't feel like you're among strangers – it's more like catching up with old friends who you haven't seen in a while.

You get to actually give those hugs we always send out virtually.

You can talk about your hardships and know that you won't be judged... and better yet, you know you'll be understood.

You will get to see everyone's true personalities – and hear their accents! It's always fun to watch Tracy and Jessica try to translate for each other, from Southern Belle to hardcore New Yorker, it's hysterical!

You'll laugh one minute, cry the next, and two seconds later you'll be laughing again.

We'll share what we do to honor our kids, how to keep their memories alive, how to deal with our struggles, and how we can make Share an even better, more inviting place for all.

I can't believe that it will be another year until I get to see you all again. And I hope that those of you who couldn't make it this year start making plans to be at ShareUnion 2011. It's pretty much guaranteed to be one of the best weekends of your life!

Hugs to all my new friends, my old friends, and those I'm still waiting to meet, Jackie

P.S. If you'd like to comment on your favorite memory of this years SU or why someone should consider coming next year, please do!

IMG_4677

Posted by Jackie G | Comments: (22) | Permalink

SHAREUNION 2010....

Jul 13, 2010 02:23pm (EST)

I can't believe that Shareunion 2010 is right around the corner!! 79 days to be exact!!!

Some of you may be wondering what Shareunion is... Trust me, I've been in your shoes and even thought it was a "virtual" event that was created for the Share site only, but it's not!!

It's a time when you can see the face and hear the voice that match the words that you found such comfort in. It's a time when you can give huge hugs to those who have made you feel like you were "normal" after such an abnormal event in life. It's a time when you are surrounded by others who just "know"!

You will laugh harder than you ever thought possible, and you will cry with those who will cry with you. We will celebrate the children that we have with us and those that we hold in our hearts! We will also learn about amazing volunteer opportunities that are available to us so that we can help March of Dimes as well as other families!!

Check out the Get Involved section for more information about Shareunion 2010!! Ask questions, leave comments, and get excited about coming to Atlanta in October!!

http://www.shareyourstory.org/webx/.ef722c1

I hope to see you there!! ~ Tracy

Posted by Angel Love | Comments: (6) | Permalink