News Moms Need

“The March of Dimes is delighted with [the] unanimous Supreme Court decision in the case Association of Molecular Pathology v. Myriad Genetics, finding that the mere identification of a gene or mutation is insufficient to qualify for a patent,” stated Dr. Jennifer Howse, President of the March of Dimes.

“This decision will allow research to proceed unimpeded on some of the most crucial and vexing questions in medicine, such as the cause of preterm birth, which affects one in every 9 babies born in our nation. Genetic predisposition almost certainly plays a key role in some cases of preterm birth; as we learn more and identify genes potentially implicated in this process, we can be confident that research will advance without being hampered by patent infringement claims.

“This decision is a victory for patients and for research. Having signed onto one of the key amicus curiae briefs in this case, the March of Dimes commends the Justices for producing a sensible, thoughtful decision. This decision sets the groundwork for a system of granting patents for genuine innovation and invention in genetics while protecting the ability of research on genes to advance.”

My Wednesday blog post series focuses on Delays and disabilities – how to get help for your child. But today I want to digress slightly and take a moment to go global. Why? Because this year, UNICEF’s State of the World’s Children 2013 report focuses on Children with Disabilities. 

It is very hard to estimate how many children around the world have disabilities. One rough statistic estimates that 93 million children, or 1 in 20 children age 14 or younger, live with a moderate to severe disability of some kind. These numbers are staggering. For every child with a disability, there is a family and community that are also affected. The ramifications of a disability can be long lasting and often devastating. This is the sad news.

The better news is that this year, UNICEF’s recent report examines how children with disabilities are faring around the globe and offers recommendations to help improve their lives.

What are some of the problems?

In many countries, children with disabilities do not have the same rights and opportunities as children who are not disabled, nor do they receive the same level of education and health care as non-disabled children. Many children with disabilities are often abused or neglected. A lack of understanding and resources contributes to the institutionalization of many children who would be better off remaining with their families and receiving care within their communities. This video of the experiences of Cara, a UNICEF worker in Haiti, shows the serious situation of many children with disabilities.

Especially important is the need for children with disabilities to be educated alongside children without disabilities, so that they may reach their full potential. By including children with disabilities in school with children who are not disabled, they are given opportunities that are critical for their success to become the best that they can be.

What is being done?

UNICEF reports that through an international commitment to build more inclusive societies, children with disabilities will have the same access to services, support and opportunities as their non-disabled peers. In order for these changes to occur, it is necessary to first enhance awareness of disability among the general public. Then, barriers to school, health facilities, public transportation, and other obstacles can be removed.

The report emphasizes the importance of including the children themselves, as well as their families, in assessing their special needs, so that their communities can best learn how to support them. Along these lines is the effort to reduce or end institutionalization of children with disabilities by promoting family-based care and “community-based rehabilitation.”

What does the future hold?

As Cara clearly demonstrates in the video mentioned above, individuals with disabilities may also possess great strengths and abilities. In the right environment, a child with special needs may flourish. This report encourages global conversations about the state of children with special needs, around the world. To quote the UNICEF report, “the future is far from grim.”

Have questions? Send them to AskUs@marchofdimes.com.

Note: This post is part of the weekly series Delays and disabilities – how to get help for your child. It was started on January 16, 2013 and appears every Wednesday. Feel free to go back to look at prior posts as the series builds on itself. As always, we welcome your comments and input.

Photo credit: © UNICEF/NYHQ2007-0745/Noorani

March of Dimes, whose mission is to give every baby a healthy start, has launched an exciting new research program in partnership with Stanford University, one of the premier research intuitions in the world. This video demonstrates the commitment and enthusiasm of some of the 130 renowned medical and biological researchers embarking on a unique transdisciplinary approach to put an end to premature birth.

How can we not be moved by Angelina Jolie’s stunning announcement today that she recently underwent double mastectomy surgery to prevent breast cancer? It is a monumental personal decision, but her generosity in sharing this news in the New York Times with all of us is bold, brave and a true gift.

This announcement comes during National Women’s Health Week. It encourages us to take charge of our health and to ask for the support we all need. It is a reminder of how important it is for all of us, men and women, to know our family health history. If you don’t know yours well, use our family health history form at this link to help you get started.

We admire and appreciate celebrities who use their influence to remind us to support one another and live healthier lives.

Happy Nurse Appreciation Week to all the incredible nurses out there! Nurses play a critical role in advancing the mission of the March of Dimes. They serve the foundation in so many ways: as health care providers, educators, researchers, fundraisers, chapter volunteers and advisors. Nurses work tirelessly and we can’t thank them enough!

March of Dimes is pleased to honor nursing excellence and pay tribute to hundreds of nurses that are at the front lines of care and have had a tremendous impact on patients and their families. Each year, nurses with various specialties are nominated for Nurse of the Year awards by colleagues and families alike. A prestigious group of healthcare professionals review applications and make award selections in a number of categories. You can take a look at the amazing Nurse of the Year award winners for 2012 from around the country at this link.

Do you know an amazing nurse? Tell us about him or her!

This week, April 21-27, is National Volunteer Week and we want to give an enormous shout out to all our wonderful volunteers. These are the extraordinary folks who make this organization great.

More than 3 million volunteers enable the March of Dimes to achieve its goals. Every year, these leaders march more than 5 million miles, speak to tens of thousands of people about the mission and help raise millions of dollars. From the very earliest days, volunteers have been full partners in the March of Dimes, working to raise funds, heighten awareness and implement critical programs to help support our mission.

This diverse group of volunteers, led by a local volunteer leadership of approximately 3,000 chapter and division board members, brings knowledge, business experience and passion to ensure the March of Dimes is the leading nonprofit organization for pregnancy and baby health.  We celebrate their leadership and that of our corporate partners and national service partners! We also have bright and energetic youth councils working in high schools and colleges. We have had celebrity volunteers from the early years (Eddie Cantor, Marilyn Monroe, Elvis Presley…) to today’s hot tickets like Pink, Dee Snider, and Thalia!

With the support of these exceptional, high-impact volunteers, the March of Dimes works to improve the health of babies by preventing birth defects, premature birth and infant mortality.

Thank you all so, SO much for what you do during this special week and all throughout the year!

On April 8, 2013, the U.S. Food and Drug Administration approved the drug Diclegis (doxylamine succinate and pyridoxine hydrochloride) to treat pregnant women experiencing nausea and vomiting.

More than half of all pregnant women have some nausea during the first trimester. For most women this nausea usually goes away by the second trimester. But for some women, nausea and vomiting may continue even past the first 12 weeks of pregnancy.

Diclegis is a delayed-release tablet intended for women who have not adequately responded to conservative management of nausea and vomiting during pregnancy, such as changes to their diet and lifestyle. These modifications include eating several small meals instead of three large meals, eating bland foods that are low in fat and easy to digest and avoiding smells that can trigger nausea.

“Diclegis is now the only FDA-approved treatment for nausea and vomiting due to pregnancy, providing a therapeutic option for pregnant women seeking relief from these symptoms,” said Dr. Hylton V. Joffe of the FDA’s Center for Drug Evaluation and Research. Observational studies have shown that the combination of active ingredients in Diclegis does not pose an increased risk of harm to a developing fetus.

For questions and answers about how drugs are approved by the FDA, click on this link.

A study published today in Obstetrics & Gynecology shows that hospital-based quality improvement programs across many states can be remarkably effective at reducing early elective deliveries of babies.

The rate of elective early term deliveries (i.e., inductions of labor and Cesarean sections without a medical reason) in a group of 25 participating hospitals fell significantly from 27.8 percent to 4.8 percent during the one-year project period, an 83 percent decline.

The March of Dimes, which partly funded the study, calls the findings good news, because babies delivered before full-term are at increased risk of serious health problems and death in their first year of life.

“This quality improvement program demonstrates that we can create a change in medical culture to prevent unneeded early deliveries and give many more babies a healthy start in life,” says Bryan T. Oshiro, MD, of Loma Linda University School of Medicine and lead author of the study.

“Reducing unnecessary early deliveries to less than five percent in these hospitals means that more babies stayed in the womb longer, which is so important for their growth and development,” says Edward R.B. McCabe, MD, medical director of the March of Dimes. “This project saw a decrease in the proportion of babies born at 37 and 38 weeks and a corresponding increase in the 39-41 week range during the one-year period studied. Additional studies, perhaps over a longer period of time, could clarify whether such quality improvement programs can also bring down a hospital’s overall preterm birth rate.”

This was the first project of a collaborative with perinatal quality improvement advocates from state health departments, academic health centers, public and private hospitals, and March of Dimes chapters from the five most populous states in the country: California, Florida, Illinois, New York, and Texas. These five states account for an estimated 38 percent of all births in the United States.

The March of Dimes urges hospitals, health care providers, and patients to follow the American College of Obstetricians and Gynecologists guidelines that if a pregnancy is healthy, to wait for labor to begin on its own. The final weeks of pregnancy are crucial to a baby’s health because many vital organs, including the brain and lungs, are still developing.

“A Multistate Quality Improvement Program to Decrease Elective Deliveries Before 39 Weeks,” by Dr. Oshiro and others, appears in the April 8 online edition of Obstetrics & Gynecology, Vol. 121, No. 5, May 2013.

April is Autism Awareness month. Did you know that the March of Dimes funds Autism research? In fact, in the past 10 years we have funded 55 grants totaling over $10.8 million. It is our hope that one day the answers we find will make further research unnecessary.

This month, many organizations are helping to spread the word about this serious disorder and the impact that it has on an entire family. And, at the same time, they are helping these families have a great time together. Here are two exciting initiatives that I want to share with you. Both welcome the kids and families affected by Autism in a very positive and FUN way!

The first is Major League Baseball’s decision to have all 30 of their Clubs raise awareness for the disorder during one home game in April, or on another date during the regular season. Many of the MLB Autism Awareness games throughout the league will provide special opportunities and a safe, friendly environment for families and individuals affected by autism.  All too often, kids with Autism (and their families) miss out on doing fun stuff like going to a baseball game. On these designated days, MLB teams up with Autism Speaks or other local autism charities to offer special events. Kids with Autism will have special opportunities to participate and enjoy the game.
 
For more information about MLB Autism Awareness and to check on your favorite team’s Autism Awareness dates, please visit MLBCommunity.org.

The second initiative involves AMC Loews and the Autism Society. They have teamed up to present sensory friendly films to families with children with Autism. Often, kids with Autism are particularly sensitive to sounds and can’t sit through a movie due to the volume of the soundtrack. In addition, kids with Autism are often sensitive to light and many can’t munch on typical movie theater snacks due to special dietary restrictions. So, on designated dates, the movie theater will brighten the theater and turn down the sound, eliminate ads and previews, and allow families to bring in their own snacks. Kids can even dance in the aisles if they want to! As AMC says, their “Silence is Golden®” policy will not be enforced unless the safety of the audience is questioned.” Sounds like a gift to parents as well as to any child with a sound or light sensitivity - a win-win for all.

To find a participating AMC Theatre near you, click here.

So, how great is this…?!  I recommend you get the family out and enjoy these special events and help raise awareness at the same time.

From a field of enormously popular and well-written blogs, it is with humility (and a great deal of excitement) that we announce that we have won the Readers Choice Award for Best Pregnancy Blog of 2013 from About.com. Thank you SO much for your votes and continued readership of our blog.  You made this possible.

Created in 2008, the blog team has been writing posts every week day on pregnancy, baby, Mom, prematurity and current news. In addition to the regular categories of posts, for our 75th anniversary the blog is now incorporating a history section authored by the March of Dimes archivist. Another new feature launched this year, is our series on Delays and Disabilities: How to get help for your child, which is receiving lots of attention. If you have any thoughts or suggestions on topics you would like covered, give us a shout.

We are delighted with this recognition and are truly pleased that our posts are so well received and helpful.