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From healthy ...... to a healthy baby

Anna , granddaughter of Franklin Roosevelt

The success of the Salk vaccine was the culmination of the dream envisioned by Franklin Delano Roosevelt when he founded the March of Dimes in 1938. A dream realized through the innova- tive and exhaustive research of Dr. . A dream supported and fostered by the American people with spirit, determination and generosity.

Since the victory over polio, this alliance of volunteerism and science has proven to be an effective model for success as the March of Dimes works to protect our nation’s young from birth defects, premature birth and other threats to their health. Millions of babies have been saved from death or disability. And we still work toward the day when every baby has the best possible chance to be born healthy. We continue to build today’s victories on the successes of the past. we continued to bein F 100 reintroduced intothe109thCongress withmore than f turit to advocate for increased federal funding for prema On thele to causesofdeathanddisabilityinnewborns. i our current research a g p i T Fig i will findanaccountofmissionactivities, allaimedat to improving infanthealth. Inthefollowing pages, you the h i 200 A hi OFFICERS’ LETTER es o n its2ndyear, aimstostemthegrowing crisisin m nvestment inmissionactivities. Ourthanksfor the or oal isresearch. In2004, theMarch o new Prematurity Research Initiative tosupplement or familieswithpremature orsickbabies whoare remature ard work anddedicationofourvolunteers andstaff, he March o p ht rovin p 4 cos g g g y f re enerosit hl treated inneonatalintensive care units ke research andex e i n n y g p g focused effort todrive focused effort revenue nant women. We ex ab y g onsors. Prematur

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A SPECIAL THANKS his new endeavors. save babies. We wishhimsuccess in andadvancingourmissionto birth the incredible problem ofpremature force andaninspirationintakingon in thenationhasbeenbothadriving and effective nonprofi t organizations one ofthemosthighly respected maintaining theMarch ofDimesas September 11. His commitmentto socially challengingyears following through theeconomically and 2004, heguidedthe foundation Board of Trustees from 2001to volunteer andChair oftheNational dedicated leadership. A long-time andenthusiastic service D.Gary Forsee for hisdistinguished The March ofDimesisgratefulto RESEARCH

National Trustee Anna Eleanor

y, Londony, Roosevelt accepted the first “Champions of the National Center Librar

on Birth Defects and Developmental Inc.

s, Disabilities (NCBDDD) Award”

in Washington, DC. The award earcher

Res credits the March of Dimes for its leadership role in creating the

n / Photo Photo / n NCBDDD — the newest center

Brow at the Centers for Disease Control

and Prevention (CDC).

Barrington Barrington

A. A.

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Mary F. Lyon, PhD, (r) of Harwell, England, won the 9th annual March of Dimes Prize in Developmental New Gene Test May Provide Answers Biology for her 1961 discovery Children with oral clefts — openings or separations involving the of the process of X-chromosome upper lip, roof of the mouth, or tissue in the back of the mouth inactivation. Considered one of the 20th century’s first major — have difficulty chewing, swallowing and speaking. They may insights into genetic control have frequent ear infections or hearing loss. Even with corrective mechanisms, it has led to tests surgery, problems may linger. Now, a research team including for families affected by X-linked March of Dimes grantees may offer new hope. Eduardo E. disorders such as hemophilia. Castilla, MD, PhD, of ECLAMC, a birth defects research program in Brazil, Andrew Lidral, DDS, PhD, of the University of Iowa, and Model of DNA double helix Andrew Lidral, DDS, PhD Eduardo E. Castilla, MD, PhD Mauricio Arcos-Burgos of the University of Antioquia in Colombia, studied nearly 2,000 families of Asian, European and South American descent who had a history of clefts. They found that 2004 “The journey of discovery continues.” parents with a gene called IRF6 were three times more likely to have a 2nd affected child than parents without IRF6. As a result of their work, a new genetic screening test may be developed to help predict a couple’s likelihood of having another child with a cleft. Ongoing research may one day lead to treatments or In 2004, March of Dimes research grants to more than 174 scientists preventions for these disorders. totaled over $24.4 million. This research spurs development of better ways to save babies from birth defects, prematurity and low birthweight. 2004 HIGHLIGHTS COMMUNITY SERVICES

The Zeta Phi Beta Sorority, a March of Dimes national part- ner, held the 2nd annual “Zeta Prematurity Awareness Sunday” on November 14. This year’s event spread the word about the crisis of premature birth to hundreds of houses of worship, reaching more than 100,000 people across the country.

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In partnership with JN Medical College in the Belgaum District of South India, the March of Dimes is Special Support for Families working to address the country’s infant mortality rate — 63 per Thrust into the world of the neonatal intensive care unit (NICU) for 1,000 live births, one of the highest a baby born prematurely or sick, families often struggle to understand in the world — by training local and cope with the turmoil. That’s where the March of Dimes NICU health care professionals (shown Family Support project comes in — with vital information packaged above) to improve prenatal care in a special Parent Care Kit, and with emotional support through and maternal health. direct services to families in crisis. One way bilingual NICU Family Support Specialist Michele Pierson assists families at Parkland Memorial Hospital in Dallas is by helping them create a keepsake Parenting in the NICU NICU Family Support marchofdimes.com/share of their baby’s progress in the NICU. Pierson says, “We offer a creative way to deal with the mixed emotions of love, hope and fear.” In Greenville, S.C., Rachel Balck helps older brothers and sisters 2004 “We’re bringing parents together.” understand the NICU through medical play, crafts and special “sibling This will be a pic of MOD care kits.” Now in 13 cities, the NICU Family Support project will receiving Champion of National reach hospitals in every state by 2007. The March of Dimes also CenterCommunity on BD&DD programs Awards. support the has launched marchofdimes.com/share. With more than 3,000 skillsdiverse and needsperspectives of local families from and babies. March of Dimes chapters registered users to date, this special online community is a place every walk of life, generation, where families can share their stories and connect with others committed nearly $8.6 million everyin grants race. and wonderfully awards to local the who understand. same...eachorganizations is thata hero help formoms babies. get Andprenatal Yet, each care andis wonderfully vital information the same...eachabout having is aa healthy hero pregnancy.for babies

2004 HIGHLIGHTS EDUCATION

A record 40 percent of women of childbearing age now report taking a daily multivitamin containing folic acid, a B vitamin that helps prevent neural tube birth defects, according to the latest survey commis- sioned by the March of Dimes. The rate of NTDs was decreased 25 percent between 1995 and 2002.

" " In January, the March of Dimes launched its Healthy Babies Healthy Business® Web site (marchofdimes.com/hbhb). The site provides company A Nationwide Call for Action Intranets and wellness programs with the latest high-quality In November, landmarks, buildings and bridges from Niagara Falls pregnancy and newborn health to the State Capitol Dome in Cheyenne, Wyo., lit up in pink and information at no cost. blue as a symbol of hope for the nearly half a million premature babies born every year. Volunteers from coast to coast joined celebrities and families of babies born too soon to support the March of Dimes effort to raise awareness of the growing crisis of premature birth. Brochures in English and Spanish helped women learn the signs of preterm labor. More than 20,000 people Wilson Building, Washington, DC Celebrities fight prematurity 2002 – 2004 National Ambassadors signed an online petition calling for increased federal funding for research. On Prematurity Awareness Day, celebrities (center photo left) Laurie Hibberd Gelman, Michael Gelman, Dr. Joy Univision Television Network 2004 “We’re raising awareness of Browne, Maysa Leak and Holly Marie Combs gave their time to produced targeted public service call the nation to action. advertisements and news stories premature birth.” that helped the March of Dimes reach Hispanic women with vital information about preparing for pregnancy. These segments, part of Univision’s broad health initiative called !Salud es Vida… Enterate!, directed viewers to the March of Dimes Spanish Web site nacersano.org. 2004 HIGHLIGHTS ADVOCACY

Puerto Rico Governor Sila M. Calderon authorized a new sur- veillance system to help identify communities at risk for birth defects. Puerto Rico’s fi rst lady, Maria Elena Gonzalez Calderon (3rd from r), and March of Dimes National Trustee G. Brent Minor (back), led the volunteer effort that resulted in this important legislation. Volunteers in Kansas and Minnesota gained similar victories.

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March of Dimes President Dr. Jennifer L. Howse testifi ed before a Senate subcommittee in support of the A Preventable Tragedy Prematurity Research Expansion and Education for Mothers who In August 2000, 2-year-old Ben Haygood of Belden, Miss., showed deliver Infants Early Act (PREEMIE signs of a mild “stomach virus.” He died 12 hours later. Nearly a Act) to expand research, education and services to fi ght premature birth. month passed before doctors told his parents, Robin and Vince, that Volunteer efforts to gain Senate and the rare hereditary disease that killed him (called medium-chain House backing resulted in more than acyl-CoA dehydrogenase defi ciency or MCAD) could have been 64 cosponsors. detected at birth by a $25 blood test. The Haygoods channeled

Eric Larson / light-of-day.com their grief into activism, lobbying state legislators to address the problem. As a result, a new law, named for Ben, has been enacted Robin and Vince Haygood Former Gov. Musgrove signs Ben’s Bill to broaden the state’s screening program to cover 40 conditions. The March of Dimes now urges all states to test for 29 conditions. Thanks to the ongoing efforts of March of Dimes volunteers, other 2004 “Expanded screening saves lives.” groups, and parents like the Haygoods, at least another 15 states are This will be a pic of MOD or will be expanding their newborn screening programs. receiving Champion of National CenterTo help on pregnant BD&DD women Awards. in skillsTennessee and perspectives quit smoking, Marchfrom of Dimes volunteers (with apple every walk of life, generation, pies to symbolize motherhood) everysecured race. $200,000 wonderfully in new state the same...eachfunds to augment is a hero current for smoking babies. Andcessation Yet, each programs. is wonderfully Smoking can the same...eachput pregnant is women a hero at forrisk babiesfor premature birth. 2004 HIGHLIGHTS VOLUNTEERS

Adel Tawfik (l), of Houston, Texas, the #1 adult walker in the nation, raised a record- breaking $116,216! A member of Halliburton’s WalkAmerica team, Tawfik lost a son to premature birth 25 years ago. “The March of Dimes helped me meet a calling in life,” Tawfik said.

" " After Melanie Sweeney’s twin daughters died from complications of their premature birth, she longed to do something in their memory. The Cleveland mom helped pioneer Erin Williams: WalkAmerica Pioneer special WalkAmerica teams “for families who have lived the March Sixteen-year-old Erin Williams knows about premature birth of Dimes mission.” In 2004, Team firsthand. Her cousin Ashley was born too small and too sick Sweeney’s 226 members raised to survive. Her newest cousins, triplets born four months $20,464. Melanie helped recruit early, won their difficult battle with premature birth with the and train 78 new teams to raise help of March of Dimes advances. Erin wanted to help the money and walk for someone they love. March of Dimes save babies, so she set out to create her own WalkAmerica in her hometown of Perry, Okla. She recruited volunteers from schools and civic clubs, church groups, friends Erin Williams WalkAmerica 2004 Erin and the triplets and family. Erin’s determination and vision helped this small town raise more than $17,000 in 2004. Today, Erin aspires to be a neonatologist and serve on the front lines of the fight to 2004 “The March of Dimes helped save premature babies.

save my cousins.” For 50 years, Wilbur Jackson has been a March of Dimes volunteer. In 1954, he was a Polio Pioneer involved in the Salk vaccine field trial. Today, through Project Alpha, Jackson is working to reduce teen by guiding young men to make responsible decisions around issues of sexuality. 2004 HIGHLIGHTS PARTNERS

Thank you to our Prematurity Campaign national sponsors.

has been the leader “ As a provider of employee “ We are extremely proud “The March of Dimes provides in raising money for the health and wellness benefits, of our partnership with the invaluable research and March of Dimes to save babies we work hard every day to March of Dimes. This is a services for families dealing because we believe so deeply enhance and extend the lives wonderful opportunity for with prematurity and birth in that mission. Our customers of millions of people who Discovery Health Channel defects. We are truly proud With generous support from and associates have been depend on us to protect their and the March of Dimes to to support the March of amazing in their passion, and health and well-being. We combine resources and Dimes in our communities.” for over 20 years they have understand very well the further generate awareness — Joe Wood raised money, supported the emotional and financial toll of the prevalence of preterm President WalkAmerica program, and prematurity and birth defects births nationwide. We are Famous Footwear most of all, cared.” can exact on a family. And delighted to have Discovery Special thanks to our Prematurity — Dene Rogers we’re proud to lend our Channel Stores conducting The March of Dimes wel- Awareness Month sponsors. Senior Vice President, Stores support to March of Dimes in-store fund-raising initia- comed Famous Footwear Kmart Corporation efforts to help ensure babies tives to customers in April for its 2nd year as a are born healthy.” benefiting March of Dimes national sponsor of March No company has done more — H . Edward Hanway WalkAmerica.” of Dimes WalkAmerica. for America’s babies than Chairman and — Eil een O’Neill Wisconsin-based Famous Kmart. Since 1984, Kmart Chief Executive Officer Senior Vice President Footwear, America’s largest associates and customers CIGNA Corporation and General Manager footwear chain selling branded, Thank you to our NICU Family have raised an unprecedented Discovery Health Channel value-priced footwear for Support national sponsors. $43.8 million to help the CIGNA returned for its 10th the entire family, became the March of Dimes save babies — consecutive year as a national Discovery Health Channel, the exclusive national sponsor in Contributing to Success including $23.5 million through sponsor of March of Dimes television network that takes the footwear category in 2003. its in-store WalkAmerica WalkAmerica. Since 1994, viewers inside the fascinat- Conducting fund-raising Additional support provided In 2004, gross contributions to the sneaker promotion. In 2004, CIGNA and its employees ing and informative world of promotions in its more than by Dey, L.P. March of Dimes included:

the company’s 20th year as the have contributed $16 million health and medicine, returned 900 stores, Famous Footwear · WalkAmerica $97 million #1 team in the nation among to the March of Dimes. In for a 2nd year in 2004 as a raised more than $940,000 20,000 participating companies, WalkAmerica 2004, CIGNA national WalkAmerica sponsor. in 2004 to support March · Special Events $40 million the Kmart team raised nearly ranked as the #6 team in the By airing news stories and of Dimes lifesaving research · Mail Donations $51 million $5 million. nation, among 20,000 partici- public service advertisements, and programs. · Mothers March $18 million pating companies raising more they helped the March of than $1.5 million. CIGNA Dimes raise awareness of the · Major Gifts, $19 million is also a founding sponsor crisis of premature birth. including Bequests, President’s of the March of Dimes Society and government grants Prematurity Campaign.