believe

explore

support

help

care

we save babies

champion

2005 Annual Report

Table of Contents

Officers’ Letter ................................. 2

Volunteers ........................................ 4

Community Services ........................ 8

Research ........................................ 12

Education ...................................... 16

Advocacy ....................................... 20

Fundraising .................................... 24

Donors ........................................... 29

Financials ....................................... 47

Boards, Committees and Chapters ................................. 50

The mission of the March of Dimes is to improve the health of babies by preventing birth defects, premature birth and infant mortality.

Dede Alpert, former California State Senator and advocate for expanded newborn screening page 20

I champion

Kevin Jones, March of Dimes volunteer and father of a premature baby page 4

I help

Dr. Stephen J. Lye, researcher studying the causes of premature birth page 12

I explore

Thalia, top Latina actress and recording star, featured in a bilingual public education health initiative page 16

I believe

Joe Hale, lifelong March of Dimes volunteer and fundraiser page 24

I support

Cheri Johnson, RN, provider of women’s and infants’ services in Baton Rouge page 8

I care

Cover photo: Chloe, born

January 31, 2006, at 24 weeks,

weighing 1 lb., 7 oz.

Officers’ Letter 32 marchofdimes.com

The importance of community was driven home to every American as hurricanes destroyed parts of the Gulf States and displaced thousands of families, pregnant women and newborns. March of Dimes presence in the NICU at Woman’s Hospital in Baton Rouge enabled us to help more than 100 sick and premature babies who were evacuated from New Orleans. Our staff and volunteers distributed infant formula, diapers, clothing and vitamins to hurricane victims in shelters, hospitals

and towns in Louisiana, Mississippi and Texas.

As the region rebuilds, together, we will continue to support women, babies and families who have lost access to basic

health services. A major grant from the U.S. Department of Health and Human Services Office of Minority Health enabled us to launch health education and prenatal care outreach services in Louisiana. Under the leadership of board member Greg Gumbel, we have created a Hurricane Assistance Fund to purchase specially equipped mobile medical units that will bring prenatal and well-baby care, including doctors, nurses and medical supplies, to women wherever they are.

In these sobering times, we must remember that behind every statistic is a life — a baby whose future hangs in the balance. In these lives, together, we find cause to carry on our fight to save babies.

Dr. Jennifer L. Howse, President

James E. Sproull, Jr., Esq., Chairman of the Board

“Where cures begin”

September 16, 2005, marked the culmination of more than a year of celebratory events and activities honoring the 50th Anniversary of the Salk polio vaccine. On that evening, The Salk Institute for Biological Studies dedicated its North Building to the volunteers of the March of Dimes.

Following the victory over polio in 1955, Jonas Salk aspired to build an institution that would foster the work of science in service to humanity, a place “where cures begin.” Funding from generous March of Dimes volunteers and donors helped make Salk’s dream a reality and ground was broken for The Salk Institute in 1961.

Over the years since then, March of Dimes volunteers and Salk Institute researchers together have fostered the legacy begun with the victory over polio. As we move into the future, it is these committed individuals and their successors who will continue to be the hope for generations of children to come. “Hope lies in dreams,” said Dr. Salk, “in imagination and in the courage of those who dare to make dreams into reality.”

The March of Dimes today is made up of people who have come together to make the future better for babies. They are scientists pursuing the causes of premature birth; outreach workers connecting women to prenatal care; volunteer leaders securing donations for a fundraising event. This annual report is dedicated to those who helped us accomplish so much in 2005 — to the people who save babies.

Together, we delivered a year of solid financial results. WalkAmerica® surpassed the $100 million mark, generating $102 million. Total public support and revenue was $228.5 million, an increase of $4.1 million over 2004. Expenses were carefully controlled. We increased our mission-related grants and awards by 6.3%, while total expenses grew by less than 1%.

Together, we celebrated the 50th anniversary of the Salk polio vaccine being declared “safe, effective and potent” on April 12, 1955. We marked this great scientific victory with an exhibit at the Smithsonian Institution’s National Museum of American History and special events at the National Press Club and the Franklin D. Roosevelt Presidential Library and Museum. The Salk Institute for Biological Studies, built with millions of dimes, dedicated its North Building to the March of Dimes as a permanent symbol of the power of volunteer action.

Together, we fought for expanded access to lifesaving newborn screening

tests. As a result of these efforts, many states took steps toward testing for 29 treatable metabolic conditions, as recommended by the March of Dimes. By July 2005, 23 states screened for 20 or more treatable conditions. These states represent approximately 38 percent of all live births in the United States.

Together, we took on the growing challenge of premature birth which now affects more than 500,000 babies each year. In addition to funding $24.6 million in research related to infant health and development, we created a new Prematurity Research Initiative and awarded six grants totaling $2.4 million. These grantees are studying the causes of preterm labor. We also convened a national symposium on prematurity, with funds from the Lehman Brothers Foundation, to encourage scientific experts to identify novel approaches to solving this complex puzzle.

We launched a new public health campaign featuring Latina celebrity Thalia that helps women learn how to reduce their risk of having a premature baby. Over the year, more than 12 million women of childbearing age were reached with this message and other educational information, including the

warning signs of preterm labor and the importance of prenatal care. With funding from the Johnson & Johnson Pediatric Institute, we hosted 150 grand rounds training sessions for 20,000 health professionals on topics related to prematurity, including smoking cessation.

We expanded our service to families with a baby in a neonatal intensive care unit (NICU). March of Dimes specialists at 23 NICU Family Support® sites provide information and comfort to 15,250 families. More than 58,000 people also received information and support from the March of Dimes NICU Web site and shareyourstory.org, our online community for NICU families.

Officers’ Letter

From left: Dr. Richard Murphy,

President and CEO, The Salk Institute;

Dr. Peter Salk, son of Jonas Salk; Dr. Howse;

James Sproull

The Salk Institute alight for the 50th Anniversary celebration

I help

Volunteers 5

Kevin Jones

Your son Kevin is 3 years old. How’s he doing?

Awesome. He’s very healthy now. He’s in school. He has no physical or mental effects from his premature birth. Every day, we count our blessings.

What were your thoughts when you first heard you were having a son?

Every man’s dream, having a son! Someone to carry on the name; of course Jones isn’t all that unique, but it was still exciting.

The day Kevin was born?

Kevin was our first child, so we didn’t know what to expect. I always thought, you get pregnant, you wait nine months and you have a baby. Well, Kevin’s birth was a little bit different. When he was born, he was the size of a soda can.

How has premature birth changed your life?

My wife, Regina, and I thought we were living the ‘American Dream.’ I was the second of my family to graduate from college. She was a lawyer. I had started my own company. We thought there’s nothing we couldn’t do; nothing we couldn’t achieve — until the day Kevin came 15 weeks too soon. It’s a humbling experience to have a premature baby. Not everything is in your control. There’s a sense of helplessness. And you know how bleak it is when the doctors tell you about the horrible things that can go wrong. For 79 NICU days, there was little we could do but be there and hold Kevin’s hand.

When Kevin finally came home, that must have been a joyful day.

It was. But it wasn’t over by a long shot. We had nine medicines, an oxygen machine and a monitor. Because he had so much equipment, we said he came with ‘D batteries.’

So you and your wife became March of Dimes volunteers?

We became Houston’s Ambassador Family. We made personal appearances. We spoke at WalkAmerica, took Kevin with us in a stroller. Last year, we walked as a Family Team. We thought we should let other folks know that you can make it through premature birth. It was really tough, more stressful than any experience I ever had in the Army.

You have a new baby now?

Yes. Dylan’s a year old. He was born full term. That day, the local television station came by the hospital for an interview with my wife, Regina. Dylan had just

A caring Houston dad, successful CEO, and Army veteran talks about having a premature son and how that frightening experience affected his life. In 2003, his son, Kevin Christopher, was born weighing just over a pound, spent 79 days struggling to survive in neonatal intensive care, and miraculously went home three weeks before he was due to be born. In his own words, Jones tells about serving as a local Ambassador Family for the March of Dimes chapter in Houston, spreading awareness of premature birth, and the ultimate satisfaction of being “just plain Dad.”

Kevin Christopher

at 2 weeks old

“I have never felt as vulnerable, not even in Panama or in the Persian Gulf, or even while jumping out of airplanes, as I did when my son was born, fragile and premature.”

Journalists go pink and blue for babies

Giggles, gurgles and an occasional whine could be heard as the babies and children of six leading TV journalists posed with their moms. The “shoot” was for a special pink and blue healthy pregnancy spread in the November 8 issue of Family Circle. The six March of Dimes celebrity volunteers — Fox News Channel’s Gretchen Carlson, CNN’s Soledad O’Brien, ESPN/ABC Sports’ Sam Ryan, Melissa Stark of NBC’s “Today” show, CBS news correspondent Michelle Miller, and Laurie Hibberd, national TV host and correspondent — also offered their personal tips on having a healthy, happy pregnancy.

Team Youth volunteers

“I learned what it takes to be a leader,” said one of the young people who attended the National Youth Conference in Washington, DC, in July. More than 300 young volunteers and advisors came together to celebrate the 50th anniversary of youth involvement in the March of Dimes — and to lay plans for the future. United in saving babies, these high school and college students honed their skills for increasing mission awareness, promoting public affairs issues, delivering effective communications, and generating double-digit growth in fundraising. Such exuberance was created for the March of Dimes that more than 90 percent of the young leaders volunteered during Prematurity Awareness Month in November.

Team Youth congratulates Kelly Clarkson, March of Dimes Team Youth Celebrity Ambassador, on winning two Grammy Awards®. For more information about Kelly and Team Youth, visit marchofdimes.com/youth.

been tested for various conditions that could cause disability or even death. The television piece was about newborn screening — what it is, and how Texas compared with the rest of the nation. We needed more funding to expand the program. Later, a bill was passed that did increase the number of conditions they tested newborns for — which is saving more babies every year.

What do you like best about being a dad?

The feeling of loving and being loved. My brother and I grew up without a dad. He was a veteran and not around much. So we committed ourselves to break the cycle. We wanted our kids to have a male role model, someone to look up to, and talk to. As a dad, I can have an impact on my sons’ lives. Give them the opportunity to do well, or just do what

they want to do and succeed. Spending time with my boys is great. I walk into the house, and they say, ‘Hi, Dad.’ I can’t believe they’re talking to me.

Professionally, what do you do?

I’m the CEO of TEMAC, a technology marketing company in Houston that I founded six years ago.

You’re also active in African-American organizations?

Well, yes. Premature birth is happening more and more in the African-American community. They don’t know why. We didn’t know why. My wife and I were both healthy people, with smoke-free, drug-free bodies. And we had a premature baby. We felt we needed to share our story. I’m a member of Alpha Phi Alpha Fraternity, Inc., which

implements national programs that uplift the community, including mentoring young black men to be responsible dads. We raise money for our own programs and for WalkAmerica. In 2005, my WalkAmerica Family Team raised $9,000.

What’s next for the Joneses as volunteers?

Now that our term as Houston’s Ambassador Family is over, Regina’s moved on to the chapter board. I’ve been on a lot of nonprofit boards, but the March of Dimes gave to me when I was in need. Their medical advances helped save Kevin’s life. I will be forever grateful. When the March of Dimes calls, I answer.

From tiny baby to top youth walkerTwelve-year-old Luke Parrish of Gainesville, Fla., received double honors this year for helping babies. He was the #1 Youth Walker in the country, raising a whopping $47,000. He was also the recipient of the first annual Tina Russo Youth Leadership Award, presented to him at the National Youth Conference in Washington, DC. Born nine weeks early, Luke has been a March of Dimes Youth Ambassador since he was 2, making appearances to raise funds for premature babies like himself. Says Luke: “I raised a lot of money this year. I’m number one. I’m 12, that’s pretty big.” In the meantime, he plans to continue working for the March of Dimes, but his big plans for the future include a PhD.

Volunteers 76 marchofdimes.com

Luke, at 12, received the Tina Russo Award from Thomas and Anthony Russo, who created it to honor their mother; shown with Dr. HowseLuke, at 2 months,

in the NICU

Team Youth volunteers at the Capitol

2005 National Ambassador, Navy Anderson (center), with youth volunteers at Washington conference

Laurie Hibberd with Jamie and Misha; Soledad O’Brien and twins Jackson and Charles; Melissa Stark with Michael. Photograph by Frank Veronsky

volunteers

Where were you when Katrina hit?

I was at the hospital. We weathered the original storm. Baton Rouge was on the evacuation route, so we began getting more pregnant women. But when the levees in New Orleans broke, patients started pouring in. It was like watching a pot boil. Buses and Army helicopters were dropping pregnant women off. Our labor and delivery unit ordinarily handles about 30 births a month. Following Katrina, we were handling more than a hundred. Our NICU was overflowing, so we closed the waiting room and converted it to a patient care room. We went out and bought large plastic tubs and thick foam to create makeshift bassinets.

This time was one of the most moving moments I’ve had in my lifetime. Every person on my staff knew why they were

there. They worked endlessly without a single complaint and did whatever needed to be done. I’m so proud of them all.

What about the moms and babies who were stranded in New Orleans?

I remember it was a Saturday and I was taking a much-needed nap when Capi Landreneau, the Director of Program Services for the March of Dimes Louisiana Chapter, called me to say she desperately needed help. She’d learned that there were babies and moms stranded in the Superdome without formula or water. Together we worked with Mead Johnson, a March of Dimes sponsor, to locate and get formula donated. We organized trucks and teams of local and state agents to get the formula delivered where it was needed. Even our medical director

drove a van full of formula down to New Orleans so those babies could survive.

How did the babies — particularly the preemies — fare?

I don’t personally know of a single baby who died. The nurses and doctors just stayed and took care of their patients. Babies who came to us from New Orleans had quite an odyssey. Many had been rescued through a window and transported in a boat to dry ground where an ambulance took them to the airport for the trip to Baton Rouge. At times we had no electricity to run IVs, so nurses had to push fluids every six hours. There

Katrina victims: Quintelle Williams

and 9-day-old daughter Ikea in New Orleans

I care

Community Services 9

Cheri Johnson, RN

As Director of Maternal Child Services at Baton Rouge General Medical Center, Cheri Johnson was on the front lines in efforts to care for pregnant women and babies displaced by Hurricane Katrina. “It was like a war zone,” she says. Johnson is no stranger to disasters. Previously, she worked at Thomason County Hospital in El Paso, where she was instrumental in identifying an epidemic of a deadly neural tube defect called anencephaly in the 1980s. “I saw four babies born with anencephaly in one day,” she says. Johnson worked with the March of Dimes and state officials to provide folic acid and education to local women and to facilitate the formation of a Texas birth defects monitoring program to identify and address future birth defects outbreaks. A March of Dimes volunteer for more than 17 years, she currently is Chair of the Program Services Committee of the Louisiana March of Dimes Chapter, which guides planning for meeting the state’s maternal and infant health needs.

“After Katrina, pregnant women were coming to the hospital with nothing, absolutely nothing.”

Help for parents in crisis

It’s like a roller-coaster ride. One minute your baby’s holding her own; the next he’s in crisis. Parents of babies in neonatal intensive care need all the comfort and help they can get as their children fight for life. That’s why the March of Dimes developed NICU Family Support®, a program that provides information and emotional support geared to the specific needs of families in crisis. Each hospital that uses the program has a NICU Family Support Specialist — a nurse, social worker, or former NICU parent — who understands the experience and knows how to help.

“The NICU Family Support Specialist was one of our biggest supporters during the whole ordeal,” said one NICU parent. “Her constant positive attitude and generosity of time spent listening were so helpful. The materials were great, but it was the Specialist who made the big difference.” NICU Family Support is currently in 23 hospitals nationwide and will expand to 39 by the end of 2006.

Families connecting to help each other

“On Share Your Story, we reveal our most difficult, heart-wrenching times. We share our fears. We sob while we write or read. And we come to love each other’s children.” This mom is talking about her experience with the March of Dimes online community for families of premature or sick babies. The site provides an easy way to find others who understand and to share information, encouragement and support.

Registration on the site quadrupled in the past year to almost 8,000 participants. And while many of the visitors to the site had no previous connection with the March of Dimes, some now play key roles in their chapters. In 2005, thousands formed Family Teams for WalkAmerica. Many now serve as ambassador families. They lobbied Congress in support of the PREEMIE Act and gathered supplies for families in the aftermath of the Gulf Coast hurricanes. Everyone is welcome to share or just follow along at shareyourstory.org.

was no refrigeration to store blood, so babies who needed blood couldn’t get it. But premature babies can be resilient.

The babies who were evacuated as you described — what about their parents?

That’s been a tremendous problem: Parents separated from their babies and not knowing where to look for them. I remember one woman — the mother of premature twins — who kept calling and calling us trying to locate her babies. The twins finally did come to us. When the overjoyed woman and her husband came in, the poor man had on women’s mules because he didn’t have shoes. I found some for him.

What happened to these parents and their babies after they were discharged?

They had no place to go. I worked with Woman’s Hospital in Baton Rouge to

get churches and other facilities to open their doors to these people and was able to arrange for supplies. The March of Dimes was incredible in helping with all this. They even provided health and other practical information about living in a shelter. I just called the national office, and they were on it immediately.

What’s your biggest concern now that things have quieted down a bit?

Everything’s changed. Words can’t explain the devastation. So many areas are completely ruined. Just gone … like someone took Lego® buildings and just smashed them all down. We have a whole new life now and we’re struggling to adjust to the ‘new normal.’

All hospitals are at full capacity now, and our acuity rates are higher. Besides an increase in premature births, we’re also seeing more babies born with birth defects. And we’re not able

to track these families because who knows where they’re living now.

I’m tremendously worried about cuts being made to our maternal and child health programs because of the huge expenses generated by the hurricanes. Like our Birth Defects Registry and our newborn screening program. All newborns should get comprehensive metabolic screening for 29 disorders. The March of Dimes has been instrumental in getting more and more states to increase their screening programs to this level. I’ve been able to get some funding, but I’m very worried about our ability to maintain these programs with all the financial cuts in the wake of the storms.

I don’t want any of our programs to go away. Maternal and child health … that’s my passion. I have a gift for it. I love it.

Sportscaster Greg Gumbel leads hurricane relief for moms and babiesWhile the immediate crisis of the Gulf Coast hurricanes has waned, thousands of displaced pregnant women, moms and babies continue to live in crowded shelters and makeshift housing. Many lack basic necessities and access to prenatal and newborn health care. Already thousands of babies have been born sick or premature.

To bring help to these families, long-time March of Dimes volunteer and national trustee Greg Gumbel is leading a new $5 million fundraising campaign that will support the creation of March of Dimes Mama and Baby buses. The mobile units, staffed with a “dream team” of doctors and nurses, and equipped with medical supplies, up-to-date technology and critical health information, will go to these pregnant women and babies in need wherever they are. Join the campaign by visiting marchofdimes.com/dream.

Community Services 1110 marchofdimes.com

Specialist, Ingrid Bergeron (left), with mom at Woman’s

Hospital in Baton Rouge

Baby Chloe (on cover) with

mom in NICU

community services

I explore

Research 13

Stephen J. Lye, PhD

What do you say when a woman asks, “Am I in labor”?

We usually must say, ‘We’re not sure.’ We are very poor at telling if a woman is in true or false preterm labor. The symptoms of early preterm labor often occur in a normal pregnancy. There are a number of tests for preterm labor. One of the more effective is a test for a substance called fetal fibronectin, but this test is most effective in identifying women who are not likely to deliver in the next couple weeks, and less accurate in predicting who will.

Why is it important to diagnose preterm labor accurately?

Preterm birth can have dire consequences. It causes 60 to 80 percent of infant deaths that are not related to birth defects.

Preterm birth also is an important cause of serious illness during the newborn period, and of disabilities, including cerebral palsy, learning problems, blindness and hearing loss. When doctors believe a woman is likely to deliver early, they take steps to try to postpone delivery and protect the baby.

A woman with threatened preterm labor will be hospitalized and often transferred to a hospital with a NICU (neonatal intensive care unit). She is separated from her family and kept in the hospital for days or weeks. This is disruptive and stressful for her and her family, as well as expensive. She’s given medications to stop contractions. These drugs often postpone labor for a few days so that she can be treated with steroids to help mature the baby’s lungs. There is no question that treatment improves the outlook for

the baby, if the baby is actually born prematurely. But these treatments also can have serious side effects for mother and baby. And about 80 percent of women with threatened preterm labor don’t need treatment. Their contractions settle down, and they go on to have full-term babies.

Are you developing a better test to diagnose true preterm labor?

We are seeking to identify a genetic signature for preterm birth that can accurately predict when a woman with threatened preterm labor will deliver. We use white blood cells as our ‘canary in a coal mine,’ or early warning system for true preterm labor. Our research shows us that white blood cells are similar to

“Understanding and preventing preterm labor is one of the most fundamental issues in obstetrics today.”

A woman in her 28th week of pregnancy is experiencing menstrual- like cramps and pelvic pressure. Frightened, she calls her doctor, who tells her to go to the hospital immediately. About 2 million women in North America are admitted to the hospital each year with these and other possible signs of preterm labor, often referred to as threatened preterm labor, according to Stephen J. Lye, PhD, Professor of Physiology and Obstetrics and Gynecology and Vice-President of Research at Mount Sinai Hospital, University of Toronto, Canada. Dr. Lye is one of six scientists awarded Prematurity Research Initiative Grants in 2005, as part of a new March of Dimes program aimed at learning more about the causes of premature birth (less than 37 completed weeks of pregnancy). Prematurity is the leading cause of death in the first month of life. In about half of all cases, the cause of preterm labor is unknown.

Preventing brain damage in premature babies

Up to one in 10 premature babies suffer injuries to the brain’s white matter, often leading to lifelong disabilities such as cerebral palsy and mental retardation. But can these injuries be prevented or reversed? March of Dimes grantee Stephen A. Back, MD, PhD, and other researchers at Oregon Health & Science University School of Medicine in Portland, have identified key factors that may prevent brain tissue from repairing itself, suggesting that some injuries could be reversed. These findings could lead to new treatments that can spare thousands of infants each year from permanent brain damage.

March of Dimes Prize winners: knock out genes

Mario R. Capecchi, PhD, of the University of Utah School of Medicine, and Oliver Smithies, MA, DPhil, of the University of North Carolina at Chapel Hill, received the 10th Anniversary March of Dimes Prize in Developmental Biology. Their development of a powerful tool called gene targeting allows scientists to “knock out” certain genes in laboratory mice, making it possible to pinpoint how a gene works and to reproduce human diseases in mice. Their discovery has revolutionized biomedical research and advanced the study of genetic diseases and birth defects.

2005 March of Dimes Prize in Developmental Biology winners Oliver Smithies, MA, DPhil, and Mario Capecchi, PhD

Stephen Back, MD, PhD

certain types of cells in the uterine lining, and the common genes in both types of cells become activated during labor.

Modern technology allows us to look at all of our genes at the same time on a single gene chip. We took blood samples from women who had threatened preterm labor, and kept track of whether or not they delivered early. We tested their white blood cells using a gene chip and saw an amazing thing. We saw distinct profiles of activated genes for women who delivered in 48 hours and those who delivered at term. Remarkably, the computer was able to identify all the women who delivered preterm.

What would this test mean for women with threatened preterm labor?

It could provide fast and accurate answers on whether or not a woman is in true preterm labor, allowing doctors to treat only those women who need it. But we have a ways to go first. We need to test our preterm labor genetic signature in many more women. Then if it continues to prove successful, we must turn it into a rapid bedside test that can provide the fast answers we need. This test also could make it possible to distinguish between preterm labors resulting from different causes, allowing us to tailor treatment to a woman’s individual needs. Then treatment could be more effective at postponing delivery, giving the baby crucial time to grow and develop. Our goal is to end up with healthy babies at the end of pregnancy.

How may this test help researchers test new treatments for preterm labor?

A good test that distinguishes women in true preterm labor would improve current clinical treatment as well as trials of new treatments. Now studies of new treatments include both women in true and false labor. If you could test only women in true preterm labor, you could test fewer women, and get accurate results more quickly and cost effectively than we can right now.

What drew you to research on preterm labor?

When I joined an obstetrics department, I saw how devastating preterm delivery could be for mother, baby and the entire family. I believe that understanding and preventing preterm labor is one of the most fundamental issues in obstetrics today.

New directions in prematurity researchThe March of Dimes Symposium on Prematurity in Washington, DC, supported in part by the Lehman Brothers Foundation, brought together 70 prominent scientists to review the current status of prematurity research. Scientists funded by the March of Dimes Prematurity Research Initiative described promising research that targets crucial questions, including whether genetic variants help explain why African-American mothers are one and a half to two times more likely to deliver prematurely than women from other ethnic populations.

The November Symposium also included scientific experts from other fields, to bring new, perhaps unorthodox, ideas to the table. Novel approaches included exploring whether “clock genes,” which regulate the timing of some biologic processes, may also help regulate the timing of labor.

Summing up, Michael Katz, MD, Senior Vice President for Research and Global Programs at the March of Dimes, said, “We hope that in the future when the problem of prematurity begins to recede, it will be our Symposium to which the origin of this success can be traced.”

Research 1514 marchofdimes.com

research

I believe

Education 17

Top Latina actress and recording star Thalia joined the March of Dimes fight against premature birth in 2005. She was featured in English and Spanish television and radio spots, print public service announcements and on health education materials. Her message, “I’m not pregnant … but I want my 9 months … someday,” includes questions women should ask their health care providers, even before they conceive, about having a healthy pregnancy and their risks for premature birth.

Thalia

Why did you get involved with the March of Dimes Prematurity Campaign?

When the March of Dimes asked me to become involved, I immediately said yes. I want to be a mother one day, and I’ve learned the best gift you can give a baby is a full 9 months of pregnancy. I think women need to see their doctors and be prepared even before they get pregnant, so I’m lending my voice to help the March of Dimes with the ‘I Want My 9 Months’ message. I’m excited to be a part of this initiative and believe it will help educate women and make them feel like they can take action to have a healthy pregnancy.

Why is the March of Dimes bilingual campaign so important?

All women need to know that there are steps they can take to reduce their risk of having a premature baby, and it’s great that the March of Dimes is creating bilingual materials for people, like me, whose first language isn’t English. I feel so proud to be a part of this. We’re going

to reach as many women as we can, especially women in my community, and I believe more babies will get a chance to be born healthy and full term.

Do you think the general public understands the growing crisis of premature birth?

Anyone who knows a family who had a premature baby understands how serious the health issues are. But, because many premature babies survive and are healthy, other people might not realize that some babies who are born too soon face lifelong health problems. We also want people to know that premature birth can happen to anyone, but if women get the right information, especially before they’re pregnant, they can be prepared and possibly reduce their risks.

What can women do to help give their babies a healthy start?

Many things. For example, women can take a multivitamin containing folic acid

every day. Folic acid can help prevent certain birth defects of the brain and spinal cord. Women can quit smoking and avoid alcohol and illegal drugs and learn how to reduce stress. Their health care providers can advise them about ideal weight, managing health conditions that could affect pregnancy, and how to recognize the signs of preterm labor.

In what other ways does the March of Dimes reach out to the Hispanic community?

The March of Dimes Web site, nacersano.org, has become the world’s leading online resource for pregnancy-related information in Spanish. In the past year, the number of visitors has doubled to more than 2 million. That’s wonderful!

“Every woman has a right to 9 months.”

Photograph by George Holz

9 preconception questions to ask your doctor or nurse1. How can diabetes, high blood

pressure, infections, or other health problems affect my pregnancy?

2. How can some prescription and over-the-counter medicines or home remedies affect my pregnancy?

3. Before I get pregnant, should I take a multivitamin with 400 mcg of folic acid each day?

4. What is a healthy weight for me?

5. How can I stay away from smoking, alcohol and illegal drugs?

6. How can I best take care of myself and lower my stress?

7. How long should I wait between my pregnancies?

8. What if premature birth runs in my family?

9. What are the signs of preterm labor?

Every year, more than 8 million children worldwide are born with a serious birth defect. More than 3.3 million die from birth defects in the first five years of life. The impact is particularly severe in developing nations where more than 94 percent of births with serious birth defects and 95 percent of deaths occur. To address this, the March of Dimes, Centers for Disease Control and Prevention, and Peking University Health Sciences Center sponsored a four-day summit in September 2005. Nearly 1,000 participants from 40 countries came together and unanimously adopted the Beijing Manifesto. This calls for working with government leaders, health care providers and other non-

governmental organizations to: educate the public about birth defects and genetic diseases; establish and maintain birth defects surveillance and monitoring systems; foster research; and establish long-term methods for prevention and care.

2005 also marked the completion of the March of Dimes “Global Report on Birth Defects: The Hidden Toll of Dying and Disabled Children.” The first report to quantify the international prevalence of birth defects, it offers comprehensive recommendations for ameliorating the problem.

Beijing hosts second international conference on birth defects and disabilities in the developing world

Prematurity Awareness Day bus on campaign trail in New York City, November 15, 2005

Day of enlightenment

The number of babies born prematurely in our country every year is equal to the population of Tucson, Ariz. — a little more than half a million. And the problem is continuing to grow. The nation was put on notice about this escalating threat to the lives and health of babies when more than 100 landmarks and buildings were lighted in pink and blue during November — Prematurity Awareness Month. March of Dimes chapters across the country held a variety of activities — rallies, health professional summits, NICU tours — throughout the month. In New York City, two specially designed pink and blue buses hit the campaign trail, carrying civic and corporate leaders, maternal and child health experts, and dozens of parents of premature babies. At stops around New York, including the CBS “Early Show,” they helped raise awareness of premature birth and what Americans can do to prevent it.

Besides providing information, the site offers a unique question-and-answer e-mail service that provides personal responses to health-related questions directly from a March of Dimes health information specialist. Nearly 30,000 questions were answered in 2005.

The March of Dimes also provides printed health education materials in Spanish dealing with prenatal care, smoking, folic acid, preterm labor, and a variety of other pregnancy and newborn topics.

Do you know anyone who has had a premature baby?

I have had the honor of working with Alexa Ostolaza, who is a very special 5-year-old little girl, and her parents, Jessica and Josue. They are March of Dimes volunteers serving as the 2006 National Ambassador Family. Alexa was born 15 weeks early, weighing just 1 pound, 4 ounces. She suffered breathing problems and bleeding in her brain, but she survived. Thanks to advances developed by the March of Dimes and 108 days in neonatal intensive care, Jessica and Josue have their little miracle!

Alexa lives with health challenges related to her premature birth, but she’s working very hard and is a delightful little girl, full of energy and curiosity. Unfortunately, her story is far from unusual, and the more than half a million babies who are

born too soon every year in the United States need our help in raising awareness and raising funds to find the answers.

Meeting people who lived through the frightening experience of premature birth is incredibly moving, and I’m very pleased to work alongside the Ostolazas in the fight to help defeat premature birth.

questions to ask...

Dr. Louis Sullivan, Prematurity Campaign Honorary Chair, and Dr. Howse visit nursery at St. Mary’s Hospital in Queens

Niagara Falls awash in pink and blue. Photograph by K.C. Kratt

education

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I champion

The former California State Senator authored the bill to expand the number of newborn screening tests required in her state. These tests, done by one tiny prick to a newborn baby’s heel, can detect metabolic disorders that, if diagnosed early, can be successfully managed or treated to prevent severe disability or even death. In this conversation, Senator Alpert talks about her campaign to gain passage of the bill, one of the babies (and her family) who inspired her to take on the challenge, and what she’s doing now for mothers and babies.

Senator Dede Alpert

August 1, 2005, the newborn screening bill you championed became effective. Did you celebrate on that day?

Yes, I did. And then I gave a great sigh of relief. This is one of those things that defy what you’re told as a legislator. ‘Don’t fall in love with a special idea, because most often it doesn’t come to pass.’ But I fell head over heels anyway.

Your bill wanted babies to be tested for every detectable disorder. You said ‘no’ when alternatives were offered. When there were delays, again, you said ‘no.’ Why did you fight so hard for passage of this bill?

I was just about at the end of my legislative career. I said to myself — I’m not going to wait any longer. If I fight hard enough I can make this happen. And if I do, I will have made a genuine difference even if I had done nothing else the entire time I was in the legislature.

In 2004, after a pilot program showed that newborn screening saved babies’ lives, you helped set up legislative hearings to gather support for expanded testing. What role did the March of Dimes play here?

The March of Dimes found the parents who came to testify. They furnished the ‘emotional part,’ which gave us the edge. The stories these families told made it very hard for anybody to say ‘no.’ Afterward, we got wonderful bipartisan support, men in the legislature, Republicans, Democrats. Everybody agreed that was the right thing to do.

Why did these March of Dimes parents have such an impact?

Most times, professional, paid lobbyists testify. But when you have ‘real’ people talking about an issue, it changes the dynamics. And that’s what happened when these parents came to help. I still get goose bumps when I think

about their stories and how they cared about the next child to be born.

One child’s story, in particular, inspired you. Tell me about Ysabel Jaquez.

Ysabel Jaquez was born with a serious genetic metabolic disorder. Since screening for it wasn’t available in California in 1999, she wasn’t diagnosed at birth. She almost died. Put on a special diet, Ysabel survived. And her doctors say she’s doing great today. But she does face the prospect of serious health problems in the future. To show their gratitude, Ysabel’s parents, Lisa and Gonzo, turned advocates. Five years ago, the family became ambassadors for expanded newborn

Newborn screening: A

simple heel prick can save a baby’s life

“You should feel secure that when you have a child born in California, the baby will receive the best opportunity to survive.”

Advocacy 21

Organic Acid Metabolism DisordersIVA Isovaleric acidemia

GA-I Glutaric acidemia type I

HMG Hydroxymethylglutaric aciduria (also called 3-OH-3-CH3 glutaric aciduria)

MCD Multiple carboxylase deficiency

MUT Methylmalonic acidemia, mutase deficiency form

3MCC 3-Methylcrotonyl-CoA carboxylase deficiency

Cbl A, B Methylmalonic acidemia, Cbl A and Cbl B forms

PROP Propionic acidemia

BKT Beta-ketothiolase deficiency

Baby’s first tests

A tiny prick to your newborn baby’s heel to get a few drops of blood for testing could save your baby’s life. Screening tests for the following 29 conditions are currently recommended by the March of Dimes.

Fatty Acid Oxidation DisordersMCAD Medium-chain acyl-CoA dehydrogenase

deficiency

VLCAD Very-long-chain acyl-CoA dehydrogenase deficiency

LCHAD Long-chain hydroxyacyl-CoA dehydrogenase deficiency

TFP Trifunctional protein deficiency

CUD Carnitine uptake defect

Amino Acid Metabolism DisordersPKU Phenylketonuria

MSUD Maple syrup urine disease

HCY Homocystinuria

CIT Citrullinemia

ASA Argininosuccinic acidemia

TYR I Tyrosinemia type I

Hemoglobinopathies (Hemoglobin Disorders)Hb SS Sickle cell anemia

Hb S/A Hb S/Beta-thalassemia

Hb S/C Hb S/C disease

OthersCH Congenital hypothyroidism

BIOT Biotinidase deficiency

CAH Congenital adrenal hyperplasia

GALT Galactosemia

HEAR Hearing deficiency

CF Cystic fibrosis

March of Dimes recommends screening for 29 conditions identified by the American College of Medical Genetics.

Number of states requiring 10 screening tests increases to 21.

March of Dimes increases number of conditions to 10 (including hearing deficiency), prompting 11 states to expand testing.

March of Dimes recommends newborns be tested for eight metabolic conditions. Three states adopt this recommendation.

March of Dimes calls for safeguards to ensure prompt reporting of test results and treatment for affected babies.

By mid-2005, 23 states test for more than 20 conditions, and 12 test for more than 10.

testing, and their efforts helped to keep this topic a top legislative priority — and made the bill a reality.

How did 10,000 pink postcards play a crucial role in the bill’s passage?

We knew we had an ally in Governor Schwarzenegger. He’s the father of four children; he has long been involved with the Special Olympics. We needed to get his attention. So our forces, including the March of Dimes, got more than 10,000 people to sign postcards in support of the bill. When these bright pink postcards were delivered to the Governor’s office, believe me, he noticed!

Why is the bill such a lifesaver?

It provides $2.7 million to increase the number of disorders that newborns are screened for to 42. Before that, we covered only four. This bill will save about 140 California babies every year.

In 2004, you left the legislature after 14 years of distinguished service. What are you doing now?

I’m a consultant on health and education issues. The Governor appointed me to his task force on education reform. I’m working on a ‘home visiting’ program to enhance parenting skills and improve the health of babies. And if the March of Dimes asked me to help save babies again, I would be there, gladly.

Connecticut

New Jersey

RhodeIsland

District of Columbia

New York

DelawareMaryland

Alaska

Hawaii

California

more than 20 tests

10-20 tests

fewer than 10 tests

Expanded testing required but not yet implemented

Newborn screening victories

Nearly half of all states screen their newborns for 20 or more recommended metabolic disorders, according to a March of Dimes 2005 state-by-state “report card” on newborn screening. Another 12 states screen for 10 to 20 disorders. Thanks in large part to our advocacy efforts, considerable progress was made from a year ago when only 21 states screened for even nine disorders. The March of Dimes now recommends screening for 29 treatable conditions, and volunteers are moving full speed ahead to make this a reality in all 50 states.

March of Dimes newborn screening progress

Grantee Dr. Robert Guthrie develops first mass newborn screening test (for PKU).

A simple and inexpensive test for congenital hypothyroidism is developed.

Screening test for congenital adrenal hyperplasia (CAH) is developed. A new technology enables screening for many conditions at once.

First screening test for biotinidase deficiency is developed.

Massachusetts becomes first state to mandate PKU screening for all newborns.

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advocacy

I support

A member of the national Board of Trustees and Liaison to the National Office of Volunteers talks about his near-Herculean feat of running 7 marathons in 7 months on 7 continents — why he did it, how he raised $225,000 to save babies, and the life lessons he learned from the experience.

Joe Hale

When did you first volunteer for the March of Dimes?

When I was four. A few weeks before I was born, my mother was diagnosed with polio and paralyzed from the neck down. She never walked again. Her first visitor was a representative from the March of Dimes, which eventually paid for her rehab at Warm Springs, Georgia. As a kid, I pushed her wheelchair down Scheller Lane in New Albany, Indiana, asking neighbors for contributions to the March of Dimes. That memory drives me every day.

And it drove you to run around the globe?

Yes, it did. The March of Dimes is a wonderful organization that helped my family and continues to help thousands of families today. After conquering polio, it now addresses premature birth. There are thousands of new parents taking shifts in neonatal intensive care units watching over their seriously ill babies. I wanted to help. I thought I could write a check, but that didn’t seem enough. As a veteran marathoner, I decided to run for the March of Dimes.

Did you ever have second thoughts?

Yeah! Even before my first marathon, I thought: ‘What have I gotten myself into?’ The planning was a lot easier than the execution.

Your quest led you over some pretty grueling terrain and against some pretty big obstacles.

In Antarctica, I ran over glaciers. In Argentina, I ran in the foothills of the Andes and through city streets, with cars … the Carbon Monoxide Marathon. At the Great Wall of China, I climbed 3,700 steps. That race was a bear!

While in Tanzania for the Mt. Kilimanjaro Marathon, you spent five days climbing to the summit of the tallest peak in Africa … right before the race? Wasn’t that a bit obsessive?

I rested for a day. Then I ran. It was a package deal — a climb and marathon all in one. How can you pass up an experience like that?

What kept you going when your body was telling you to stop?

I thought about the 500 people and companies that had pledged money for me to complete the project, and the sense of responsibility overwhelmed me. I thought about the people who told me wonderful stories about how the March of Dimes had touched their lives. I couldn’t let them down.

What do you do for a living? And how did you get away from your job for so long?

I’m the Vice President and Chief Communications Officer at Cinergy and President of The Cinergy Foundation in

Fundraising 25“What better feeling is there than helping others? Believe me, raising money

to save babies makes you feel as good as running marathons!”

Volunteers participate in WalkAmerica

Cincinnati. Fortunately, my boss shares my enthusiasm for physical activity.

Because of the media coverage, you’ve become somewhat of a celebrity. How did that affect your mission for the March of Dimes … and your life?

It has enabled me to double the amount of money I set out to raise. And, judging from the thousands of letters and e-mails I received, I realized that I inspired people to be healthier, and to look for ways to help make their communities a better place to live.

What have you learned by running around the world?

Lots of things. ‘It’s better to give than receive.’ The day we American runners noticed the deplorable condition of the Tanzanian runners’ shoes, we took off our own shoes and gave them to the Africans. You would have thought we were giving them keys to a new house. And ‘There’s no place like home’ (and your family is home). My son, Grant, a graduate school student at Dartmouth, joined me to run the Australian Marathon. Earlier, when he was in the Peace Corps in West Africa, he administered the oral polio vaccine to children. Our running together was a nice closing of the circle started with grandmother and continued with grandson.

What did you do when it was all over?

I went home and hugged my wonderful wife, Linda.

FedEx Corporation“FedEx is proud to share with the March of Dimes a commitment to ensuring on-time, healthy deliveries. Over the years, the March of Dimes has helped thousands, including many FedEx employees, who have had premature babies or have been connected to someone who has. We hope that through this national sponsorship we can assist many more.”

David Bronczek, CEO, FedEx Express

FedEx employees have participated in WalkAmerica since 1979. In 2005, the company became a national sponsor of the event, raising more than $1.6 million, and ranking the No. 5 WalkAmerica Team. Over the past seven years, FedEx contributions have totaled more than $5.2 million through their FedEx Express, Ground, Freight and FedEx Kinko’s business units. FedEx also is a national sponsor of the Prematurity Campaign.

Famous Footwear “The March of Dimes provides invaluable research and services for families dealing with prematurity and birth defects. We are truly proud to support the March of Dimes in our communities.”

Joe Wood, President, Famous Footwear

In their third year as a national sponsor of WalkAmerica, Famous Footwear, a division of Brown Shoe Company, moved up the ranks into the No. 10 position among the top teams nationwide and broke the million-dollar mark for the first time. Since 1997, Famous Footwear customers and associates have contributed some $3 million to support March of Dimes lifesaving research and programs. Famous Footwear also supports the March of Dimes Prematurity Campaign by raising awareness through its stores, online and among customers.

Farmers Insurance Group“Farmers Insurance Group has supported the March of Dimes for more than a decade, raising millions of dollars for healthy babies. Farmers has been serving the community for more than 75 years. This year, we are committed to contributing $1 million nationwide to the March of Dimes.”

Paul Hopkins, Chairman & CEO, Farmers Insurance Group

Farmers Insurance Group is in its first year as a national sponsor of WalkAmerica. Farmers’ commitment to the March of Dimes spans more than a decade and includes more than $11.2 million raised through WalkAmerica and special events. In 2005, Farmers broke the million-dollar mark for the first time and raised more than $1.2 million.

Kmart Corporation“Our renowned in-store WalkAmerica sneaker promotion continues to raise awareness of the serious problem of prematurity and exceeds expectations year after year with the help of our associates and customers. We are proud that no company has done more to show their compassion and commitment to the health of babies for the past two decades.”

Aylwin Lewis, President and CEO, Sears Holding Corporation

Since 1984, Kmart associates and customers have raised an unprecedented $49.3 million to help the March of Dimes save babies. Kmart’s support of the March of Dimes through WalkAmerica includes an in-store sneaker cutout promotion generating more than 90 percent of the company’s total annual contribution. 2005 marked Kmart’s 21st year as the No. 1 WalkAmerica Team in the nation, raising more than $5.5 million.

CIGNA“CIGNA people come to work every day determined to do what it takes to enhance and extend the lives of millions of people — men, women and children — who depend on us to protect their health and well-being. This is our prime imperative as a provider of employee health and wellness benefits for employees. And it’s why we’re proud to stand with the March of Dimes in the fight against prematurity and birth defects and to keep babies — and their families — healthy and secure.”

H. Edward Hanway, Chairman and CEO, CIGNA Corporation

CIGNA has been a national sponsor of WalkAmerica for 11 consecutive years, and a national sponsor of the Prematurity Campaign since 2003. CIGNA and its employees have contributed $17 million to the March of Dimes. In WalkAmerica 2005, CIGNA ranked the No. 8 team in the nation.

Thanks, 2005 WalkAmerica National Sponsors

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fundraising

Our Donors

NATIONAL CORPORATE PARTNERS

$5 MILLION +

Kmart Corporation

$3 MILLION +

Citigroup

$1 MILLION +

Bank of America CorporationCIGNAFamous FootwearFarmers Insurance GroupFedEx CorporationKnowledge Learning

CorporationPublix Super Markets, Inc.Wachovia Corporation

$500,000-$999,000

ABN AMROBank of the WestBlue Cross Blue ShieldRetail Ventures, Inc.SBC Communications, Inc.Sprint NextelSunTrust Banks, Inc.Sutter HealthThe Kroger Co.

NATIONALWALKAMERICASPONSORS

Arm & Hammer Oral CareCIGNADiscovery Health ChannelFamous FootwearFarmers Insurance GroupFedEx CorporationFirst ResponseKmart CorporationMead Johnson NutritionalsPrevention Magazine

The March of Dimes gratefully acknowledges the generosity of all donors who have made gifts between January 1, 2005 and December 31, 2005. Each gift we receive is impor-tant because it helps us save and change lives. Space does not allow us to recognize the millions of indi-viduals, companies and foundations that have supported us in the past year. But our sincere appreciation is extended to all contributors.

PREMATURITY CAMPAIGN

NATIONAL SPONSORS

CIGNAFedEx CorporationJohnson & Johnson Pediatric

Institute, L.L.C.Motherhood Maternity

NATIONAL MEDIA SPONSORS

American Baby MagazineWorking Mother Magazine

SUPPORTERS

Adeza BiomedicalMatria Healthcare, Inc.

PREMATURITY AWARENESS DAY/MONTH SPONSORS

Arm & Hammer Oral CareFirst ResponseMedImmune, Inc.

PREMATURITY CAMPAIGN PARTNERS

American Academy ofPediatrics

American College of Obstetricians & Gynecologists

Association of Women’s Health, Obstetric & Neonatal Nurses

STATE PREMATURITY FUNDThese individuals, corporations and foundations are support-ing the Prematurity Campaign through $10,000+ gifts directed to state-level funds established for this purpose.

Andersen FoundationAnthem Blue Cross &

Blue Shield of OhioJudith & Bo AughtryMarcie & John BakerBlue Cross & Blue Shield of

AlabamaBlue Cross & Blue Shield of

Florida

Blue Cross & Blue Shield of Mississippi

Kathleen BogganDavid & Reba CampbellHarry & Carole CapellJoan & Mark CardinaleEmory T. Clark FoundationRani Clasquin & Eric HarslemGarrett H. C. Colmorgen, MDMr. & Mrs. Eduard de GuardiolaGretchen & Terry DeatonDelmarva Broadcasting

CompanyTracey & Mark DoiJanet EstesFamous FootwearFeinstein FoundationMr. Jere GardeGlaxoSmithKlineBalaji Govindaswami, MD, &

James Donald Whitaker, Jr.HCA FoundationDavid & Kathleen HollowellDick & Darlene KleinertMr. & Mrs. Robert LindnerMary H. & Joseph H.

MarshallMasimo CorporationJane MasseyOliver H. MathewesThe Meadows FoundationMedImmune, Inc.Frederick V. Miller, MD, MHA,

MBAKathryn MorrisonNational Speaking of Women’s

Health FoundationNetJetsDr. & Mrs. Roger NewmanGabrielle & Glenn A. OratzPalmetto HealthPalmetto Rural Telephone

Cooperative, Inc.Parker Poe Adams & Bernstein

LLPWilliam PopeJoel PrestonProvidence JournalDavid B. RichSid W. Richardson FoundationSelect Health of South CarolinaThe Spinx CompanyStephen B. TiltonClaudine Torfs, PhDVictoria J. Van KirkJohn WoodruffZeta Phi Beta Sorority, Inc.Anonymous

Donors 29

Record-breaking successIn 2005, gross contributions to the March of Dimes included:

• WalkAmerica ....................................$102 million

• Special Events ....................................$41 million

• Mail Donations ...................................$49 million

• Mothers March ...................................$20 million

• Major Gifts, including Bequests, President’s Society and government grants ............................$18 million

Thank you

28 marchofdimes.comMotorcyclists hit the road

in March of Dimes Ride

WalkAmericaAdditionalNational SponsorsArm & Hammer Oral CareDiscovery Health ChannelFirst ResponseMead Johnson NutritionalsPrevention Magazine

AdditionalMedia SponsorsABC Radio NetworksAmerican Urban Radio NetworksBusiness TalkRadio NetworkComcast CableLifestyle TalkRadio NetworkPaperChainXM Satellite Radio

Top WalkAmerica TeamsKmart CorporationCitigroupPublix Super Markets, Inc.Bank of America CorporationWachovia CorporationKnowledge Learning CorporationCIGNAFedEx CorporationFarmers Insurance GroupFamous Footwear

Prematurity CampaignNational SponsorsCIGNAFedEx CorporationJohnson & Johnson

Pediatric Institute, L.L.C.Motherhood Maternity

National Media SponsorsAmerican BabyWorking Mother

SupportersAdeza BiomedicalMatria Healthcare, Inc.

Prematurity Awareness Day/Month SponsorsArm & Hammer Oral CareFirst ResponseMedImmune, Inc.

NICU Family Support®

National SponsorsChildren’s Medical Ventures/ RespironicsMedImmune, Inc.Pediatrix Medical Group

National SupporterDey, L.P.

Guest Chefs at Signature Chefs Auction