From Polio To Prematurity

March of Dimes, the leading non-profit organization for maternal and infant health, will celebrate its 75th anniversary in 2013 and its ongoing work to help all babies get a healthy start in life. About 4 million babies are born in the United States each year, and the March of Dimes has helped each and every one through research, education, vaccines, and breakthroughs. (Click here to view the multi-media news release.)

The March of Dimes plans a year-long celebration in 2013 beginning on January 30th to honor its founder, President Franklin Delano Roosevelt, who was born on that day. Affected by polio himself, FDR established the Foundation in 1938 to “lead, direct and unify” the fight against polio. In FDR’s day, polio was an epidemic disease that paralyzed or killed up to 52,000 Americans, mostly children, every year.

The March of Dimes got its name when comedian Eddie Cantor asked Americans to send their dimes to FDR at the White House to help defeat polio. The foundation later funded the development of the Salk vaccine, which was field tested in 1954 and licensed a year later, as well as the Sabin vaccine, which became available in 1962. Nearly all babies born today still receive a lifesaving polio vaccine.

Throughout its history, the March of Dimes has supported many important research milestones that have benefitted newborn and child health. For example, in 1953, James D. Watson and Francis Crick identified the double helix structure of DNA, announcing, “We have found the secret of life.” Watson had received a grant from the March of Dimes that helped support his research on “protein patterns.” The team’s work won the Nobel Prize in 1962 and paved the way for modern genetic medicine, including the mapping of the human genome.

Another research breakthrough came in the early 1960s when March of Dimes-supported
grantee Dr. Robert Guthrie developed the first screening test for PKU (phenylketonuria), allowing prevention of intellectual disabilities caused by PKU through diet. Since that time, the March of Dimes and family groups have campaigned tirelessly for expanded newborn screening. Today every baby born in every state in the U.S. receives screening for dozens of conditions that could cause catastrophic health problems or death if not detected and treated promptly at birth.

“For 75 years, March of Dimes has dedicated itself to giving all children an equal chance at a healthy start in life,” says Dr. Jennifer L. Howse, president of March of Dimes. “Since our founding, research has been a key strategy that has led to many new treatments and saved thousands of lives.”

Today, the March of Dimes is hard at work to prevent the epidemic of premature birth, which affects nearly a half million babies every year. It established the March of Dimes Prematurity Research Center at Stanford University School of Medicine that is bringing together the brightest minds from many disciplines -- geneticists, molecular biologists, epidemiologists, engineers, computer scientists and many others -- to work together and find answers to explain and prevent preterm birth.
The March of Dimes current research portfolio consists of about $100 million in grants to investigators throughout the United States and in about a dozen countries worldwide.
As part of its ongoing mission to improve babies’ health, the March of Dimes is releasing its first consumer guide to pregnancy this month. Written by March of Dimes medical adviser Dr. Siobhan Dolan and published by Harper Collins, Healthy Mom, Healthy Baby includes tips on pre-natal care, and the latest guidance and advice on genetics, caffeine and alcohol in pregnancy, immunizations you need, and many other topics. The book can be pre-ordered at: marchofdimes.com/healthymombook.

The March of Dimes is the leading nonprofit organization for pregnancy and baby health. With chapters nationwide and its premier event, March for Babies®, March of Dimes works to improve the health of babies by preventing birth defects, premature birth and infant mortality. For the latest resources and information, visit marchofdimes.com or nacersano.org. Find us on Facebook and follow us on Twitter.

News Moms Need

New Blog Series

Having a baby is a wonderful journey. It is filled with unexpected joys, moments of laughter, pride and boundless love. But what happens if something goes wrong? Or, if you suspect that something is not right with your baby or child? What should you do?

The first thing to realize is that you are not alone. There are many parents out there who have been (or are) in your shoes. This new blog series will give you the knowledge you need to help you deal with the unexpected. It will take you from the beginning (when you suspect or confirm that something is not going according to plan), right up through your baby’s childhood to help you navigate the choppy waters. Hopefully, with this “GPS,” you will feel in control of your journey.

If you are reading this blog post, you may suspect that something is not right with your baby or child. But, you may not want to take the next step because you are cautious about labeling your child, or you are simply afraid of the road that you may end up going down. Well-meaning grandparents, relatives or friends may tell you that your child is fine, marches to a different drummer, needs discipline or time. That may all be true, but you know your child best. If you think that there is a chance that your baby is struggling or is delayed, then the best gift you can give your child is the help he needs to catch up – as soon as possible. Time matters. In many cases, babies and young children qualify for “early intervention services” based simply on a “developmental delay” and a more detailed diagnosis is not necessary to receive helpful services. So, “labeling” your child may not be an issue at all. Try not to worry about what other people may think; just concentrate on getting your child help.

Why this blog? Why March of Dimes?

The March of Dimes’ history is lengthy. Since 1938 we have been working tirelessly to improve the health of babies and children. President Franklin Delano Roosevelt (FDR) founded the March of Dimes to defeat polio, a crippling disease that afflicted him. Success came in the form of a vaccine which protects children from polio to this day. FDR was an outstanding advocate for the disabled, and knew all too well how a disability affects not only an individual, but also his/her family and society.

After polio, the March of Dimes went on to fund some of the greatest medical advances of the 20th century. In fact, our work has been recognized with 13 Nobel Prizes (that could be its own blog series!). But I digress…The point is that inherent in the March of Dimes is the goal to help babies and children live healthier lives. So, helping parents find resources for their children when things go wrong fits right in with our mission.

Why me?

As I write this blog, my personal story may unfold from time to time. I am a parent of two children – a boy and a girl – one with special needs. How I wish I had had a blueprint to follow when my daughter was a toddler experiencing “developmental delays!” I was lost and frankly clueless. I took parenting classes, went to support groups and of course took my daughter to countless doctors. There was no Internet to “Google” a diagnosis or find support groups. Nevertheless, I muddled through, and amassed an enormous amount of information along the way. Now, I want to share my knowledge with you so that you can be an informed parent and educated advocate. As a Health Educator with a Master’s of Science degree and a parent of a special needs child, I hope to bring a perspective that provides a combination of “I get it – I’ve been there” with a factual blueprint for you to follow.

My kids are both in their 20’s now, and I have to say I would not trade in this journey for the world. My special needs baby girl is a recent college graduate (looking for her first job), and despite the fact that she may always experience more bumps in her road than the “typical kid,” she has done remarkably well. She also sends a message to all parents with kids with “issues” to focus on their children’s gifts and strengths, and in time, you will see that they will blossom to be the best they can be. Never say never!

So take a good look at this poster of a polio victim holding a photo of FDR. The hard-to-see caption reads “We polios can fill almost any job.” To me it speaks volumes. If an individual afflicted with polio could be our nation’s president for four terms, it is time to look beyond the disability and see the ability in everyone.

So, stay tuned for the upcoming series Delays and disabilities – how to get help for your child. It will appear every Wednesday for the next few months. We will love to hear your comments and input!

Tags: developmental delays, disabilities, early intervention, getting help, resources, special education, Special needs
Posted in Baby, Help for your child, Mommy, Uncategorized

 

T-shirt design contest and Youth Challenge

Kids in K though 12^th Grades – Design and submit your original artwork to our chapter’s Youth T-shirt Design Contest.  For information, rules and guidelines, visit www.modyouthchallenge.wordpress.com

 

To win the shirt, raise just $75 as part of your walksite’s Youth Challenge Team.  For more information, visit the website.

ShareUnion

In conjunction with the 2012 Volunteer Leadership Conference in Orlando, Florida, we held the 8th annual ShareUnion. ShareUnion, a gathering of ShareYourStory (www.shareyourstory.org) members from around the U.S. and around the world, had nearly 60 attendees from 20 states, Canada, Guatemala and the Dominican Republic.

Staged by the March of Dimes volunteers who maintain the site and ensure that every new member is welcomed and every post is answered, ShareUnion is a unique family engagement event. Not only do participants learn tools to cope with loss, their child’s birth defect, prematurity, or special need, they also learn new and deeper ways to engage with the March of Dimes. Eleven members of the ShareYourStory volunteer leadership committee additionally attended the VLC to gain further knowledge of their important role within the Foundation.

Our keynote speaker, South Carolina NICU Family Support Specialist Hope Lienau shared her family’s story of heartbreak and love. She also spoke of her first contact with the March of Dimes NICU Family Support program, how she began as a mission volunteer and then became a NFS Specialist.

Please www.shareyourstory.org.

Flu is no joke

 In general, the flu is worse than the common cold. Symptoms such as fever, body aches, tiredness, and cough are more common and intense with the flu. People with colds are more likely to have a runny or stuffy nose and a sore throat. Your health care provider can give you a test within the first few days of your illness to tell you if you have the flu or something else.

Children, pregnant women, the elderly and immune-compromised are at highest risk for severe, even life-threatening reactions. You’ve probably seen the numbers in the news. To date, the CDC has received reports of 18 deaths of children this season. Influenza activity continues to spread in the U.S. and most of the country is now experiencing high levels of influenza-like illness (ILI), according to CDC’s latest FluView report. The CDC continues to recommend influenza vaccination for people who have not yet been vaccinated this season and antiviral treatment as early as possible for people who get sick and are at high risk of flu complications.

The influenza vaccine is safe at any time during pregnancy. Almost all women who are or will be pregnant during flu season can get the shot. Getting the flu shot can help protect you from getting influenza and spreading it to others. Getting a flu shot during pregnancy is good for your baby, too. Babies born to women who get the vaccine during pregnancy are less likely to get sick with influenza. As newborns, they are not able to get the vaccine until the age of six months, all the more reason to have those around them vaccinated.

“While influenza vaccination offers the best protection we have against influenza, it’s still possible that some people may become ill despite being vaccinated,” says Dr. Joe Bresee of the CDC. “Health care providers and the public should remember that influenza antiviral medications are a second line of defense against influenza.”

Antiviral treatment (sold commercially as “Tamiflu®” and “Relenza®”) started as early as possible after becoming ill, is recommended for any patients with confirmed or suspected influenza who are hospitalized, seriously ill, or ill and at high risk of serious influenza-related complications. Treatment should begin as soon as influenza is suspected, regardless of vaccination status or rapid test results and should not be delayed for confirmatory testing.

Seek medical attention immediately if you experience any of the following:
• Difficulty breathing or shortness of breath
• Purple or blue discoloration of the lips
• Pain or pressure in the chest or abdomen
• Sudden dizziness
• Confusion
• Severe or persistent vomiting
• Seizures
• Flu-like symptoms that improve but then return with fever and worse cough

Tags: childhood illness, fever, flu, influenza, Pregnancy, vaccination, vaccine

January is National Birth Defect Month

Did you know that 1 in 33 babies born in the U.S. has a birth defect?

Most people don’t realize how common these conditions are. Every 4 ½ minutes, a baby is born in the United States with a major birth defect. These conditions are common, costly and critical. In fact, birth defects are a leading cause of death in the first year of life. And, for affected babies who survive and live with these conditions, birth defects increase the risk for long-term disabilities. Birth defects not only impact babies born with these conditions; they also have an emotional and financial impact on their families and communities.

The good news is that we’ve learned a lot about what might increase the risk for birth defects. For example, we know that taking certain medications, having uncontrolled diabetes, smoking cigarettes, or drinking alcohol during pregnancy can increase the risk for birth defects. We also know that certain things, like consuming folic acid daily before and during early pregnancy, can reduce the risk for major birth defects. The CDC continues to study the causes of birth defects, look for ways to prevent them, and work to improve the lives of people living with these conditions.
Each year, MOD and the CDC join many organizations to recognize January as National Birth Defects Prevention Month.

It’s important to remember that many birth defects happen very early during pregnancy, sometimes before a woman even knows she is pregnant, so planning a pregnancy and working to get healthy before becoming pregnant can make a difference.

Written By: Cynthia A. Moore, M.D., Ph.D. Director
Division of Birth Defects and Developmental Disabilities
National Center on Birth Defects and Developmental Disabilities
Centers for Disease Control and Prevention

Tags: birth defects, disabilities, folic acid, Pregnancy
Posted in Uncategorized | No Comments »

First Baby Of 2013 Has Great Expectations

Babies born in 2013 have a better chance for a long and healthy life than earlier generations, thanks to 75 years of health advances, made possible in part by the March of Dimes.

The March of Dimes says babies born next year will live longer and are less likely to have a birth defect than those born 75 years ago. They are also much less likely to die from an infectious disease thanks to widespread use of vaccinations to prevent polio, rubella, measles and several other infections. 

The March of Dimes was founded in January 1938 by President Franklin D. Roosevelt. A polio sufferer himself, FDR founded the organization to “lead, direct and unify” the fight against polio. The March of Dimes funded the development of the Salk vaccine which was tested in 1954 and licensed a year later, as well as the Sabin vaccine which became available in 1962. Nearly all babies born today still receive this lifesaving injection. More information about March of Dimes history can be found at marchofdimes.com/75.

“The birth of a baby is a special moment for every family. Babies born today and in future generations will live longer and healthier lives, in part, because of 75 years of March of Dimes commitment to the health of mothers and babies,” said Dr. Jennifer L. Howse president of the March of Dimes. “Today, we are hard at work to prevent premature birth, which affects nearly a half million babies every year, so that one day all babies will get a healthy start in life.”

Each of the four million babies born in the United States this and every year benefits from March of Dimes research, education and work to give all babies a healthier start in life. Babies born in 2013 can expect to live about 78 years, 14 years longer than an infant born in 1938, when the life expectancy was only 64. They are also almost 8 times less likely to die in infancy.
Babies born next year also will be screened for 31 genetic, metabolic, hormonal and/or functional conditions, including PKU (phenylketonuria) within the first hours of birth. March of Dimes grantee Dr. Robert Guthrie developed the mass PKU test, the first of many newborn screening tests infants now receive, and allowed for prevention of intellectual disabilities through diet. Today, every baby born in every state in the U.S. receives screening for dozens of conditions that could cause catastrophic health problems or death if not detected and then treated promptly at birth.

Many serious birth defects have declined over these 75 years. For example, neural tube defects or NTDs (birth defects of the brain and spine) have decreased by nearly one-third since 1998, when the U.S. Food and Drug Administration mandated that grain foods such as bread and pasta be fortified with folic acid.

The March of Dimes is working to prevent the epidemic of premature birth. Through Strong Start, a partnership with the U.S. Department of Health and Human Services and the American College of Obstetricians and Gynecologists, the March of Dimes has been getting out the word that “Healthy Babies Are Worth the Wait.” The campaign urges women to wait for labor to begin on its own if their pregnancy is healthy, rather than scheduling delivery before 39 completed weeks of pregnancy.
The March of Dimes is the leading nonprofit organization for pregnancy and baby health. With chapters nationwide and its premier event, March for Babies, March of Dimes works to improve the health of babies by preventing birth defects, premature birth and infant mortality. For the latest resources and information, visit marchofdimes.com or nacersano.org. Find us on Facebook and follow us on Twitter.

Meet the March of Dimes 2013 National Ambassador Family

Chris and Vince Centofanti thought they knew all about preterm birth. She was a neonatal nurse-practitioner caring for critically ill babies, and he worked for GE Healthcare’s maternal-infant care division, providing specialized medical equipment to hospitals. But then their own baby, Nina, was born nine weeks early, weighing less than three pounds. She suffered from respiratory distress and spent her first five weeks fighting for her life in a newborn intensive care unit (NICU).

While pregnant with Nina, Chris felt unwell at 31 weeks and went to the hospital. She was diagnosed with HELLP Syndrome, a form of high blood pressure with elevated liver enzymes and a low blood platelet count. It is a rare, but potentially life-threatening illness that typically occurs late in pregnancy. The only treatment is to deliver the baby as soon as possible. For the next 48 hours, Chris was treated with steroids to help develop baby Nina’s lungs before birth. At birth, Nina was immediately transferred to the NICU.

Today, Nina Centofanti has grown into an active 7-year-old who loves to dance, climb trees and turn handsprings. She has been named the March of Dimes 2013 National Ambassador. As ambassador, Nina and her family will travel the United States visiting public officials and corporate sponsors and encouraging people to participate in the March of Dimes’ largest fundraiser, March for Babies. Yesterday, she and her parents were interviewed on Fox & Friends where they shared their story and support of March of Dimes programs that help moms have healthy, full term pregnancies.


In addition to Nina, the Centofantis have an older son Nick, and a second daughter, Mia, who was born at 35 weeks of pregnancy, thanks in part to weekly progesterone treatments which reduced the risk of premature labor. “Even though things didn’t go as planned, we’ve been blessed with three healthy children, thanks in large part to the work of the March of Dimes. Just a few years ago, the outcome might be been very different,” says Chris. She adds, “Thanks to the care that Nina received, and the support of the March of Dimes for research and treatment, now we also know the relief and joy parents feel when their child survives and becomes healthy enough to leave the NICU and go home.”

March of Dimes Commemorative Coin Act Headed to the President!

You did it!! On Monday evening, the U.S. Senate passed the March of Dimes Commemorative Coin Act, which honors our 75th anniversary. The sale of these coins in 2015 will yield up to $5 million for our mission of improving the health of women and children. The bill now awaits President Barack Obama’s signature to become law.

Advocacy by chapter volunteers and staff was vital in making this commemorative coin a reality. March of Dimes volunteers across the country created a groundswell of support for this legislation, sending letters, holding meetings and making phone calls to persuade 72 Senators and 305 Representatives – more than two-thirds of each chamber – to cosponsor the respective bills.

During the Great Depression, citizens sent their precious dimes – four billion of them – to the White House to fund research in the successful fight against polio. This time, the sale of these commemorative coins will help fund research and programs to identify the causes of premature birth. A dime defeated polio; this special dollar will help fight premature birth.

Stay tuned in the future for updates about the production and availability of the coin in 2015

Join us for Virginia Lobby Day!

        

We are looking for Virginia March for Babies families to join the March of Dimes in Richmond, VA on January 15^th to help spread the word to our elected Virginia Senators and Delegates. If you would like to volunteer your time to help the March of Dimes spread the word on important health issues please email Dona Dei at ddei@marchofdimes.comor call at 571-257-2301.

More to follow!

If you are unable to attend Lobby Day, tuned to learn what you can still help spread the word.

Help Celebrate 75 Years of March of Dimes Progress with 75 Days of Gratitude

The March of Dimes will kickoff its 75^th anniversary year next month, and we’d like to hear how you or your family have been touched throughout its history. Tell us what March of Dimes breakthroughs you are thankful for.

Please send your gratitude of our researchers, volunteers, staff, programs, etc. to hkane@marchofdimes.com to be considered for our 75 days of Gratitude Campaign. Your submissions and photos may be shared on our March of Dimes MD-NCA Facebook page. 

Check our Facebook page starting January 3, 2013, in celebration of the progress the March of Dimes has made through the years.