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Public Information: 1-866-2STJUDE, ext. 3306 Jacob Simons’ Donations: 1-800-822-6344 Visit our Web site at www.stjude.org. Inner Vision St. Jude Children’s Research Hospital, American Lebanese Syrian Associated Charities and ALSAC are registered trademarks. Page 4 Promise is a quarterly publication of the St. Jude Children’s Research Hospital was founded by the late Department of Public Relations St. Jude Children’s Research Hospital 332 N. Lauderdale St. PromiseA publication of St. Jude Children’s Research Hospital Spring 2004 entertainer Danny Thomas. It opened February 4, 1962. The institution was created because Memphis, Tennessee 38105

St. Jude Children’s Research Hospital’s of a promise Danny made during the depression era to St. Jude Thaddeus, the patron saint mission is to find cures for children with Features catastrophic diseases through research and treatment. 3 Windows of Opportunity of the hopeless. From washing panes to alleviating pain

Hospital Director Arthur W. Nienhuis, MD 4 Inner Vision ALSAC National Executive Director St. Jude patient Jacob Simons “Show me my way in life,” Danny prayed. In return, Danny promised to build St. Jude Richard C. Shadyac ALSAC/St. Jude 8 Staying Alive Senior Vice President of Thaddeus a shrine. That shrine became a world-class research institution that treats Long-term survivors of HIV Communications and Public Relations children regardless of race, color, creed or their ability to pay. This remarkable event also Jerry Chipman 12 Computing Cures at Super Speed Director of Public Relations Saving lives with the help of a supercomputer inspired the name of this magazine, Judith W. Black ALSAC Vice President of Communications 14 A Shared Vision George Shadroui Finding new treatments for retinoblastoma Promise. Publications Manager and Editor Elizabeth Jane Walker 17 Flipping Through the Pages of a Life Art Director Scrapbooking as therapy Jessica W. Anderson Photo Editor Jere Parobek 20 Bench to Bedside Reaping the benefits of research Photographers Seth Dixon Laura Hajar Ann-Margaret Hedges 22 A Sound Contribution Pensacola News Journal Promesa y Esperanza Contributing Writers Tanuja Coletta Joe Hanna Highlights Alicia H. Matthews Victoria Tilney McDonough 2 Achievements and Events Carrie L. Strehlau Guest Author Jimmy Naifeh Perspective Editorial Advisory Board 24 Jimmy Naifeh Lisa Baker The Hope and the Promise Bonnie Cameron Leslie Davidson Pat Flynn, MD Mark Hendricks Marc Kusinitz, PhD Phil McCarty Carlos Rodriguez-Galindo, MD Penny Tramontozzi St. Jude Children’s Research Hospital is an equal-opportunity employer. For inquiries about stories in this David Tucker publication, call the Public Relations department at (901) 495-2125 or e-mail Sally Wiard [email protected]. Visit our Web site at www.stjude.org/media. Articles and photos may be St. Jude Children’s Research Hospital, Memphis, Tennessee John Zacher reprinted with permission. ©2004. On the cover: Jacob Simons (see article, page 4). Photo by Seth Dixon. Highlights

Avian flu making the protein a versatile tool for St. Jude Developmental Neurobiology. For the second winter in a row, the completing different tasks. Vinculin Baker is senior author of a report on this world’s medical and scientific communi- enables cells to move within developing study that appeared in Proceedings of the ties turned to experts at St. Jude for help tissues and organs of the embryo and National Academy of Sciences. we made a visit to the hospital,” Mike during a global crisis. Robert Webster, spark the healing of wounds. But vinculin The anti-cancer drug, CCI-779, is says. “It was more than we expected PhD, and his colleagues at St. Jude spent can also regulate the ability of cancer undergoing clinical trials for the treatment of a children’s hospital. To meet several months studying the H5N1 “bird cells to move away from tumors and of cancer. Baker says the findings have the staff and see the kids in person flu” outbreak in Asia. Webster worked spread cancer to other parts of the body, direct relevance to understanding the bio- WINDOWS convinced me that our donations with officials there to make recommenda- according to Tina Izard, PhD, of St. Jude logical basis of a variety of human disor- were meaningful.” tions about stopping the spread of this Hematology-Oncology. ders caused by Pten deficiency. The Gurnicks are proud of what disease, which sickened thousands of Izard led the research team and is the of they are doing to help the children at birds and killed individuals in Thailand first and senior author of a report on this St. Jude, and they encourage others to and Vietnam. work, which was published in the January Poisoning cancer cells OPPORTUNITY do the same. In late January 2004, the World Health 2004 issue of Nature. St. Jude investigators have discovered “St. Jude takes patients whether BY ALICIA H. MATTHEWS Organization (WHO) sent samples of how an enzyme crucial to the cell’s ability they can pay or not,” says Mike. “If the the avian flu virus from Vietnam to to decode genes and duplicate chromo- families have insurance, they’ll take it, St. Jude, where scientists began creating AAAS Fellow somes can be turned into a poison inside but if not, they take care of the chil- a vaccine against this strain of the bird James Downing, MD, chair of cancer cells. dren anyway. flu. Webster directs WHO’s U.S. Pathology at St. Jude, has been awarded The discovery is an important step “It’s a good feeling when you know Collaborating Center at St. Jude. Using the distinction of Fellow in the American toward designing a new class of anti- Mike and Mary Gurnick meet Nobel you are helping kids get well.” a reverse genetics system devised at Association for the Advancement of cancer drugs. Such drugs might be given laureate Peter Doherty, PhD, during a A charitable gift annuity allows tour of St. Jude. From washing panes to St. Jude, scientists in Webster’s Science (AAAS). Election as an AAAS with an existing agent that targets this donors to receive a fixed income for laboratory began creating a new strain Fellow is an honor bestowed upon mem- enzyme, creating a one-two punch against alleviating pain—Mike life in exchange for the transfer of cash that could be used as the master seed for bers by their peers. solid tumors and leukemia. The enzyme, ike W. Gurnick is a man or marketable securities. The fixed vaccine manufacturing. Fellows in AAAS have been elevated topoisomerase 1 (Top 1), is crucial to who commits to whatever and Mary Gurnick are payment rate is based solely on the age In response to the crisis, Webster to the rank because of their efforts to the cell’s ability to unwind the DNA of M task he decides to accom- of the beneficiary. With a charitable and Richard Webby, PhD, both of advance science or applications that are chromosomes and separate the two plish, including a 58-year span as an now using their talents gift annuity, the donor may specify St. Jude Infectious Diseases, were inter- deemed scientifically or socially distin- strands making up a giant molecule. industrial window washer. What began whether to receive an immediate annu- viewed by reporters from major media guished. As part of the Section on This activity permits the cell to decode as a part-time job turned into a lucra- and resources to help ity, with payment to begin not later outlets, including Time and Newsweek Medical Sciences, Downing was elected specific genes or to make a copy of the tive career, and at the age of 84, Mike than one year from the date of the gift, magazines, NBC Nightly News, ABC AAAS Fellow for elucidating the function entire chromosome. is still proudly working a few days the children of St. Jude. or a deferred gift annuity, from which World News Tonight, BBC (London), of the AML1/ETO transcript and its genes “We showed that modifying Top 1 so each week. payments are not to begin before a The Discovery Channel, The New York in normal and leukemic cells. it became locked onto the DNA molecule But that’s not where his work ends. specified future date. Times, The Wall Street Journal and is enough to cause cell death,” said Mary- Although Mike’s job keeps him busy, The Washington Post. Ann Bjornsti, PhD, of St. Jude Molecular he and his wife, Mary, also make time Research Hospital and have donated to New drug and Pten Pharmacology. Bjornsti is senior author of to help improve the lives of others. the hospital for almost 10 years. To learn more about Investigators at St. Jude used an exper- a report on this work, published in the Married for more than 50 years, the The Gurnicks were donors to Vinculin and cancer cells imental anti-cancer drug to prevent or November 2003 Proceedings of the Gurnicks hold a special place in their St. Jude before ever visiting the hospi- charitable gift annuities and St. Jude scientists have discovered reverse abnormal brain cell growth that is National Academy of Sciences. hearts for children. Mike is a member tal, but it was during one special visit how a protein called vinculin undergoes caused by lack of the anti-cancer gene of the American Legion, a community that they met Peter Doherty, PhD, a other ways to give, call the exquisitely precise changes in its shape. Pten. The study demonstrated that the run- These recent news items reflect service organization that supports St. Jude immunologist who won the This discovery is helping answer away cell growth in the absence of Pten is many causes that assist disadvantaged Nobel Prize for Medicine. Impressed St. Jude Gift Planning questions about the life of cells, the triggered by a second gene called mTor. only a handful of the lifesaving children. He and Mary are also with that experience, the Gurnicks development of tissues and organs and The findings show that mTor plays projects occurring at St. Jude. For involved in their church and with a decided to increase their donation department toll-free at the spread of cancer from one part of the multiple roles in the brain from regulating information about other recent local camp for underprivileged chil- through a charitable gift annuity. body to another. the size of individual cells to more com- dren. In addition, they are longtime “We started out sending monthly (800) 830-8119 ext. 2081. Slight changes in the shape of vinculin plex functions of neurons, such as signal- discoveries, visit the St. Jude Web supporters of St. Jude Children’s donations and decided to do more after completely change its role in the cell, ing, according to Suzanne Baker, PhD, of site at www.stjude.org/media.

2 Promise / Spring 2004 Spring 2004 / Promise 3 Inner “The hilltop hour would not be half so day when Haik told her Jacob wonderful if there were no dark valleys he needed to remove joyfully to traverse.” ÐHelen Keller Jacob’s other eye. “He runs the came out of the operat- bases

SETH DIXON VISION One autumn evening in 1998, Jessica ing room and told me, during a VISION Wickel knelt by the bathtub, drying her ‘If I don’t take his eye T-ball game. BY ELIZABETH JANE WALKER toddler’s wet body. Gazing into his eyes, out, I’m going to risk she noticed an unusual glare. As she his life.’” changed his diaper, she again glimpsed a Through her tears, THE PENSACOLA NEWS JOURNAL OF COURTESY shadow within his pupil. The next day a Jessica replied, “I’d

SETH DIXON pediatrician examined Jacob and suggest- rather have my son ed that he go to St. Jude Children’s here and blind than not Research Hospital. have him at all. He’s “The doctor never told me that it was there in the operating Jacob Simons may cancer,” Jessica says. “But I knew exactly room; you know what what St. Jude was, because I’d done a you have to do. Go have lost his sight, Math-a-Thon when I was in school. Then save my child.” it hit me: ‘He’s got cancer!’ Jacob recovered “And so I passed out in the doctor’s quickly, but his mom but not his vision. office.” mourned for him. Jacob had retinoblastoma—a malig- “Everything that he nant tumor of the retina—in both eyes. would never be able to At St. Jude, Jessica and Jacob met do just flashed before acob Simons’ days shimmer Barrett Haik, MD, chief of the St. Jude my eyes,” she says, with the bright colors and per- Ophthalmology division, who put the her voice cracking J petual motion of childhood. family at ease. with emotion. “He Pedaling a shiny red bike through his “I thank God for Dr. Haik every day,” would never see his little brother, Kaleb, team, Jessica was thrilled but skeptical. suburban neighborhood, he grins with says Jessica. “He’s a doctor who will sit again. He would never be able to play “How exactly is Jacob going to do this?” delight as the breeze caresses his face. down and talk on your level. And he’ll baseball or do other things that he she asked. Sometimes he vaults toward the heav- actually sit there and cry with you. He enjoyed. And he would never see what his “You don’t worry about anything. You ens on his trampoline or motors cares just as much for these kids as their mommy looked like again.” just bring him,” Young responded. around the yard on a green, battery- own parents do.” Because Jacob joined the team mid- powered tractor. Occasionally he tests Haik, the late Charles Pratt, MD; “Did you hear me hit the ball?” season, he was unable to attend practice his coordination—and his mother’s Carlos Rodriguez-Galindo, MD; and ÐJacob Simons before his first game. When he arrived at nerves—by hopping on a silver and Matt Wilson, MD, led the team that the ballpark, “Coach Buddy” explained purple pogo stick. But the first-grader treated Jacob. In April of 2003, Jessica discussed how the game would work: After hitting is happiest when he’s headed for the “I’ve been doing this for about 25 Jacob’s experiences on the air during a the ball off the tee, Jacob would hold a ballpark, dressed in the sky-blue uni- years, and Jacob’s was one of the most St. Jude radiothon on WKSJ 95.1. coach’s hand to run the bases. When the form of the Marlins, his T-ball team. aggressive cases that I’ve seen,” says Electrician Buddy Young was listening. Marlins were outfield, Jacob would serve “Blue is my favorite color,” he says. Haik. The doctors used chemotherapy, “I was trying to work with tears just as catcher; a teammate would catch the That observation might seem pecu- radiation therapy, lasers, freezing treat- rolling down my face,” Young says. “At ball and give it to Jacob, who would then liar, coming from a boy who lost his ments and radioactive implants. Nothing the end of Jessica’s story, she said she hand it to the umpire. sight four years ago. But though can- seemed to work. regretted that she’d never get to see Jacob “His very first game, he hit the ball cer ravaged Jacob’s eyes, it could not “It was like the tumor cells were play baseball.” and ran to first base with a big smile on claim his spirit. immortal,” Haik recalls. Fearing that That comment haunted Young, a his face,” Jessica says. “I cried so hard, And as his friends, family and the cancer might spread to Jacob’s brain, T-ball coach. “I’m not a real emotional because I was watching my child do teammates can attest, Jacob Simons Haik removed the boy’s right eye in guy,” he says, “but all I thought about something that I never thought I would has a gift for instilling others with a November of 1999, the left eye 14 for three days was Jacob’s story. I didn’t see him do.” new depth of vision. months later. see any reason why he couldn’t play ball.” A couple of weeks later, Jacob made Jessica says she will never forget the When Young invited Jacob to join his his mommy cry again.

4 Promise / Spring 2004 Spring 2004 / Promise 5 SETH DIXON COURTESY OF THE PENSACOLA NEWS JOURNAL OF COURTESY

Jacob completes an art project with the support of his mother, Jessica. In addition to playing baseball, Jacob regu- Jacob hands the ball to an umpire during a Marlins game. His participation brought clarity to ultra-competitive parents and larly rides a bicycle, jumps on his trampoline, plays video games and drives a battery-operated vehicle. “You never coaches who had been blinded by excessive rivalry. “When Jacob got his first hit in his first real game,” says Coach Buddy hear Jacob talk about how he can’t see,” Jessica says. “To be honest, he thinks he can see.” Young, “all the competition went out. Nobody was worried about winning or losing after that.”

The bases were loaded when Jacob clapped and screamed, and all the compe- Last year, Young’s baseball league when encouraged to learn Braille. Jacob honest, he thinks he can see.” very angry with God,” she admits. “I said, came up to bat. He hit the ball so far tition went out,” Young says. “Nobody created an annual award for the player finally agreed to study Braille, but still Jacob can dribble a basketball, ride a ‘God, all this praying that I’ve done, and that he knocked all the runners home. was worried about winning or losing after who exhibits the best attitude and the disdains the cane. scooter, jump on a trampoline, play video you haven’t even listened to me.’” As he sprinted for first base, Jessica that; not just in games that involved us, most courage and love for the game. To avoid curbs and obstacles when rid- games and drive battery-operated vehi- At night, Jessica would lie in bed went ballistic. but in all 12 teams in our league.” Jacob was the first recipient of this ing a bicycle, Jacob listens carefully to his cles. Currently, he is anticipating and cry. “Why, God?” she railed. “This “I was screaming; I was jumping up When Jacob joined the Marlins, a honor, which has been named the Jacob mom’s verbal directions. In addition to a ski trip, a horseback riding weekend isn’t fair!” and down; I was on the fence,” she says. coach told Jessica that team pictures were Simons Heart Award. having a keen sense of balance, an inquis- and golf lessons. But then Jacob came and sat by her. “It was just amazing. Even the opposing scheduled for later that week. “After the TV crews and journalists have chroni- itive nature and a healthy dose of courage, “Jacob’s really smart and has a good “Mommy,” he said, “I know my eyes team was hollering for Jacob.” pictures were over, I found out that they cled Jacob’s exploits. Jessica even he is also observant. memory, but he does things that I can’t were sick, and I know that I can’t see. But had already had their team pictures received a phone call from the Florida “Jacob knows the voices of the explain scientifically,” Haik says. “He seems it’s okay. Don’t be sad.” “The best and most beautiful things in made,” she says. “But Jacob was a part of governor’s office asking for her address. people he knows and cares about,” says almost to have another perception that allows “Now I know that God did listen to the world cannot be seen or even the team now, and so they had resched- Jeb Bush wanted to write Jacob a letter. “I Mindy Lipson, RN, a certified nurse him to judge distance and space. me,” Jessica says. “Jacob’s got a great touched. They must be felt within the uled their photo to have him in it.” was sorry to learn that you have lost both practitioner in St. Jude Hematology- “I know he doesn’t have eyes, but God attitude. He’s playing T-ball. He’s happy heart.” ÐHelen Keller Then cancer struck again. “Coach of your eyes to cancer,” Bush wrote. “I do Oncology. “He’s very brave, perceptive bless him, I’m glad he can see. I just and he’s healthy and he’s alive. God’s not Buddy” discovered that his son, Brady, not think that will stand in the way of and pretty amazing.” don’t know how he does it.” letting Jacob suffer. Children play T-ball, but adults take it had leukemia. While Brady was undergo- your dreams and plans.” One day, when riding in the car, Jacob “So every day I say, ‘Thank you, seriously. At many games, parents and ing chemotherapy, Young continued commented, “Look, Mommy, there’s “We live by faith and not by sight.” God.’ Every day. And I know that He coaches yell strident commands, dispute coaching the Marlins. Jessica ponders the “I can see everything!” ÐJacob Simons Burger King.” Jessica did a double- Ð2 Corinthians 5:7 listened to me.” calls and engage in verbal brawls. Jacob irony of the situation. “Did God bring us take. Sure enough, Jacob had correctly changed all that, bringing clarity to those together?” she muses. Today, Brady’s Jacob is an independent and confident distinguished the brand of hamburger Jessica says that her experiences with “Please, dear lord, I always pray that blinded by rivalry. disease is in remission, and Young looks 7-year-old. “I don’t need that stick,” he by the scent. Jacob have opened her eyes to the you’ll keep me cancer free for the rest of “When Jacob got his first hit in his forward to coaching both Brady and said, when presented with a cane. “I don’t “You never hear Jacob talk about nuances of gratitude. my life and let me live to be a hundred.” first real game, both sides stood up and Jacob this summer. have to learn these dots,” he pronounced, how he can’t see,” Jessica says. “To be “When Jacob lost his last eye, I was –Jacob Simons’ bedtime prayer

6 Promise / Spring 2004 Spring 2004 / Promise 7 ANN-MARGARET HEDGES

The opportunity to focus on the long-term aspects of surviving with B HIV is also welcomed by the care- Y givers and researchers who treat

T Antwoine and hundreds of other ANUJA HIV/AIDS patients each year at St. Jude Children’s Research Hospital. Yet, with 40 million people infect-

C ed with HIV and 15,000 new infec-

OLETTA tions occurring daily, the search for a cure continues so that this preventa- ble disease can finally be stopped.

STAYING ALIVE Potent cocktail HIV Patricia Flynn, MD, of St. Jude Infectious Diseases believes Antwoine has every reason to feel optimistic. Treatment has improved dra- HIV-infected children are facing brighter futures thanks to matically since the early 1980s when the AIDS epidemic was identified. powerful life-extending drugs. But St. Jude clinicians say “Between 1987 and 1995, we were all more education and improved therapies are key to stopping focused on single-drug therapies,” she says. “It wasn’t until 1997, when we the AIDS-causing virus. finally learned that many drugs acting against the same target are going to be more effective, that we came up with FIFTEEN-YEAR-OLD ANTWOINE virus that causes AIDS. The five-pill-a- highly active antiretroviral therapy, or has the kind of gentle grin that would day regimen he has followed since diag- HAART.” make female classmates blush. His tall nosis at age 5 allows Antwoine to live A three-drug cocktail now considered frame, trim, dark hair and glasses lend a with hope instead of fear. standard therapy, HAART allows people studious air that is offset by typical He doesn’t listen to those who equate with HIV to manage the illness as a youth fashion: untucked, red plaid HIV and AIDS with an automatic death chronic condition much like diabetes. The button-down and white T-shirt hanging sentence. “I would tell people who drug combo has shown remarkable suc- over baggy jeans. CD headphones peep choose to believe that a different story,” cess in stemming the transfer of HIV from out from under his collar. It’s a look that says the ninth-grader who dreams teens carefully plan to look not-so-care- of playing baseball for the fully planned. And like most teenagers, Yankees. “Yes, I do have HIV, Antwoine roots his identity in his but I take my meds every clothes, music and hobbies—not in the day and do right for human immunodeficiency virus (HIV) myself. No one knows he acquired at birth. when it’s going to be Antwoine is among a growing num- their time, so I concen- ber of long-term survivors of HIV, the trate on the future.”

Nehali Patel, MD (center) and Marion Donohoe, RN, use creative methods such as puppet-play to teach patients how to take pills.

8 Promise / Spring 2004 Spring 2004 / Promise 9 include a lack of prenatal care and Donohoe says. “She looks up at me and most made HIV the smallest sliver. “They that kids with HIV can be like those who women unaware of their HIV/AIDS asks the same question every time: ‘Did “Taking a clinical go through different stages of how ‘big’ have sickle cell disease and sit in a class- status. According to Flynn, 15 percent you find the cure yet?’ All I can do is HIV is in their lives, but they all want to room without being afraid.” of HIV-infected women learn about smile and hug her and tell her, ‘No, but research finding and be more than the disease. They want to COURTESY OF JON HOBANS,COURTESY GLAXOSMITHKLINE their condition during labor. She also we’re working on it, sweetie.’” lead healthy lives.” points to a lack of universal HIV Until a cure is found, St. Jude staff seeing its impact in the Because patients are living longer, Holding out hope screening of pregnant women and members can offer patients some good St. Jude researchers can study late effects Antwoine can’t help but dream of the growing rates of HIV infection among news: HIV-infected children who adhere to general population has of disease and treatment such as why day scientists invent a magic tablet that women of childbearing age as addi- their medicine schedules are expected to some patients experience metabolic bone will rid him of HIV. “That would be the tional problems. lead fairly normal, healthy lives. been very exciting.” disease, abnormal build-up of fat in the greatest,” he says. Yet, he keeps a positive Currently, the biggest challenge “If you are born with HIV, and it’s not gut and upper body and issues that affect outlook on his life, his pills and his regu- Flynn sees is a mushroom in the num- under control, it can cause significant cen- since birth,” Patel says. She adds that adherence patterns throughout life. lar check-ups at St. Jude. “I don’t see ber of adolescent HIV cases, which tral nervous system damage and develop- many St. Jude patients have been able to St. Jude investigators are studying how those as things that limit me,” he says, largely result from risky behaviors. mental delays,” says Nehali Patel, MD, use single sets of drugs for five years or children metabolize HIV/AIDS drugs in flashing his grin again. “They are the Half of the nation’s new HIV cases who treats St. Jude HIV/AIDS patients. more simply because they are disciplined order to develop tailored dosages, and the things that keep me alive so I can do what occur in youth aged 13 to 24. A “But if it’s treated and parents give medi- about taking their pills. hospital has begun a process to help I want to do.” Centers for Disease Control and cines as prescribed, you’ll find kids who, if St. Jude patients never have to carry patients transition to adulthood with infor- His mother echoes her son’s enthusi- Prevention survey of 15,000 high you saw them in school or out playing the burden of treatment by themselves. mation on insurance, employment and asm, “He is a miracle,” she says. “He’s school students found that about half with their friends, you would never know The hospital offers a multi-disciplinary public assistance programs. going to make it.” Pat Flynn, MD, of St. Jude Infectious Diseases and had unprotected sex and more than had HIV.” team of doctors, nurses, social workers, Researchers at St. Jude are also con- NBA legend Magic Johnson participate in an HIV/AIDS educational event. 250 injected illegal drugs despite the But convincing teens to conform to a pharmacists, nutritionists, psychologists, ducting safety trials for fact that nearly all the students had daily pill routine isn’t easy, especially chaplains and psychiatrists to tackle all an AIDS vaccine The HIV Alphabet been exposed to HIV/AIDS education. when most regimens must be taken twice aspects of the disease. “Our approach is designed to overcome the A is for Aches that you have all the time mothers to their babies, which is the most Already struggling to promote preven- a day. “That’s a huge burden, and they get family-centered, comprehensive and various strains of HIV. B is for Bad to get sick all the time common way children under age 13 are tion tactics, caregivers have their work tired of it,” Patel says. A lack of support coordinated, and we treat families as St. Jude is continually C is for Coughing infected with the virus. cut out for them as they attempt to con- from friends and family, side effects of partners,” says Donohoe. “If you ignore involved in community D is for Drugs that you have to take As a member of the Pediatric AIDS vince teens that following strict therapies treatment and difficulty in accepting the any aspect there would be guaranteed fail- outreach efforts, both in E is for Effort for fighting your disease Clinical Trials Group (PACTG), St. Jude could lead to longer, productive lives. illness can also be barriers. But patients ure because the kids have different needs the United States and F is for Fighting the bad virus you have played a significant role in a successful who do not adhere strictly to the schedule every time they visit.” around the world. Patel G is for the Good cells to fight the bad virus 1992 study—the first randomized clinical can develop resistance to medicines, mak- says there can never be H is for HIV trial to test the drug zidovudine in preg- We’re working on it ing the drugs useless. With only 18 to 20 enough education I is for the Immune System nant women. “We’re proud to say that we St. Jude pediatric nurse practitioner medications available to treat HIV/AIDS, The smallest sliver because even though J is for “Jump” for taking your medicine contributed a large number of women to Marion Donohoe, RN, prays for an AIDS wiping out options can create dangerous One of the most devastating aspects of more people seem aware K is for Keeping us healthy this revolutionary study,” says Flynn, who cure if for no other reason than to stop her situations. “New medications are being the disease is the stigma attached to being of how AIDS is transmit- L is for Long-lasting life holds the Arthur Ashe Chair in Pediatric HIV positive. While more and more teens ted, the stigma is still M is for Many, many medications AIDS Research at St. Jude. “By 1994, we understand they can live long lives with present. N is for Nothing can put you down saw a dramatic drop-off in the number of “She looks up at me and asks the same question the virus, they are still hesitant to tell even “The more people O is for Opposite people who don’t take all their medicines infants and children with HIV. Taking a their best friends. St. Jude created a spe- know about the problem, P is for People with HIV clinical research finding and seeing its every time: ‘Did you find the cure yet?’ All I can cial weekly support group for teen patients get tested and learn about Q is for Quality of life impact in the general population has been so they can talk about the issues they face the disease, the less stig- R is for Research to find a cure very exciting.” do is smile and hug her and tell her, ‘No, but in a safe, non-judgmental environment. ma the disease will have, S is for Standing out in a crowd The study led to therapies that have “You’d be amazed at how many brave, and people won’t have to T is for Terrible, terrible disease to have reduced the rate of mother-to-infant HIV we’re working on it, sweetie.’” courageous teens are out there who live in fear all the time,” U is for Unique children transmission from as high as 25 percent to choose not to be defined by their disease,” Patel says. “I, of course, V is for Virus below 2 percent in North America and Donohoe says. In a study where teens hope for a cure. But I W is for Wise kids with HIV who take their meds Europe. Yet, all women do not obtain treat- heart from breaking every time one cer- developed, but it takes several years, and were asked to divide their lives into pie would also like to see the X is for Xtra-ordinary kids with HIV ment; in the United States 300 to 400 new tain patient comes for follow-up visits. our patients can’t count on always having pieces with slices for school, family, day when HIV is treated Y is for Youth babies are born with HIV infections each “She is the most precious young girl, very another regimen available, especially if friends, hobbies and HIV, Donohoe says as a chronic illness, so Z is for Zinging through life with zero illness year. Flynn says contributing factors quiet, healthy, an honor-roll student,” they’ve been on multiple drug regimens

By St. Jude kids

10 Promise / Spring 2004 Spring 2004 / Promise 11 sense, although this is a St. Jude resource, data and other kinds of information. The it will produce knowledge that will be a supercomputer is being used by the resource for the entire world.” “We used to do large database Bioinformatics group and researchers in The supercomputer, known technically the Structural Biology department for as a Linux cluster, permits several proj- searches against the Genbank, many projects at St. Jude. ects at once—or one very large project— “Many of the important questions being to be completed quickly. “To give you an which contains all the human asked by our researchers require enormous idea how this has really impacted our computing power,” says Pat Ford, the studies, we used to do large database genome data and all the DNA supercomputer facility’s operations director. Computing searches against the Genbank, which con- Structural Biology researchers use the tains all the human genome data and all sequence data from every supercomputer to conduct studies on pro- the DNA sequence data from every organ- teins that play a critical role in various ism that has ever been studied,” Naeve organism that has ever been cancers with the goal of discovering how says. “It used to take us 11 days of com- these proteins work. “These studies puting time to do a particular kind of studied. It used to take us 11 include efforts to identify new drugs by search. With the new BladeServer, we can screening millions of compounds using Cures at do that in about four hours. It’s a remark- computational methods and efforts to days of computing time to do a able improvement for us.” understand key proteins in cells involved Bioinformatics is an entirely new dis- particular kind of search. With in tumorigenesis,” Naeve says. cipline merging molecular biology and “This is an extremely exciting time to computer sciences and makes computing the new BladeServer, we can be working at St. Jude,” Ford says. “The critical to current biomedical research. more experience we gain with our super- St. Jude has eight doctoral-level bioinfor- do that in about four hours.” computer, the more effectively we’ll be Super Speed maticists working in the Hartwell Center able to use it, and the more rapidly we’ll who provide expertise in mining genome find cures for catastrophic diseases.” data, gene expression data, proteomics St. Jude ranks among world’s top supercomputer users. SETH DIXON

BY CARRIE L. STREHLAU

magine having the power of 280 “This system really gives us the oppor- “St. Jude is now in the same arena as personal computers at your fin- tunity to do research that we couldn’t major computer centers operated by gov- gertips. Researchers at St. Jude conceive of doing without having this ernments, major corporations, communi- Children’s Research Hospital do kind of horsepower,” says Clayton Naeve, cations corporations and physics research not have to imagine it—they PhD, chief research information officer centers around the world,” Naeve says. have it. and director of the Hartwell Center for St. Jude is one of only two medical insti- ISt. Jude has joined the ranks of world- Bioinformatics and Biotechnology at tutions and the only children’s research class supercomputer users with the St. Jude. “It makes it possible for us to hospital on the list. installation and successful testing of an do more things more quickly.” “St. Jude stands out in the top 500 list IBM BladeServer system, which can The supercomputer’s colossal comput- because it is one of the few medical insti- perform more than 600 billion operations ing capacity ranks St. Jude 251st among tutions with direct access to a supercom- per second. The supercomputer, about the top 500 supercomputer users in the puter of this capacity,” he adds. “This the size of two household refrigerators, world. The list is created by supercom- resource is dedicated to research that will will speed research by reducing the puter experts from the University of benefit children and, in the long run, ben- time it takes for scientists to move Mannheim, Germany, the University of efit all people who suffer from some of from data collection to discovery of Tennessee and Lawrence Berkeley the same catastrophic diseases that threat- Pat Ford, Clayton Naeve, PhD, and Scott Malone are all part of a team that helps researchers harness important new findings. National Laboratory in California. en children around the world. In that the power of the hospital’s new supercomputer. Capable of performing more than 600 billion operations per second, the BladeServer is intended to help St. Jude researchers find cures more rapidly.

12 Promise / Spring 2004 Spring 2004 / Promise 13 PHOTOS BY SETH DIXON

hree-year-old Hannah Williams likes to toma inherit the mutated gene from their parents. The other play doctor with her doll, Sweetie. But 75 percent develop it before birth. Although treatments for unlike other girls her age, Hannah the disease have improved tenfold in the last several knows what her doll is feeling when she decades, many unanswered questions remain. administers shots, takes her temperature Hannah Williams did not inherit bilateral retinoblastoma and gives her “sleep medicine.” She is from her parents; she developed it in utero. If she has chil- Talways gentle with Sweetie, reassuring her that “it will be dren, they will have a 50 percent chance of developing the okay; it won’t hurt,” especially when she has to do some- disease. Sadly, children with bilateral retinoblastoma have thing to Sweetie’s eyes. a 40 percent chance of developing other primary cancers. When Hannah was 13 months old, a swinging door “Retinoblastoma is the most clear-cut hereditary cancer accidentally hit her head. In one day, her parents went from in the human body,” explains Barrett Haik, MD, director of thinking their daughter had a lazy eye to torn retinas to the St. Jude Eye Clinic. “Some may ask: Why worry about bilateral retinoblastoma, a fast-growing cancer of the retina a disease that only affects 200-300 kids a year? Well, it’s that can be fatal. the only tumor where you have such a clear genetic predis- “In all my 38 years, I never could have fathomed what I position. It was one of the first cancer genes cloned, and if felt the minute we were told our baby had cancer,” Missy there is ever going to be gene therapy, retinoblastoma is Williams says. “All the breath in my body just fell away.” going to be the disease that’s going to be well suited for it.” Hannah’s family had noticed a strange, white reflection that appeared in one of her eyes in photographs. “Everyone’s eyes would be red from the flash except Seeking answers for that one eye, or there would be a white speck on her Carlos Rodriguez-Galindo, MD, of Hematology- eye that we thought was just dust on the lens,” Missy Oncology is leading a multidisciplinary team that is devel- explains. But the healthy, happy little ball of fire seemed to oping a retinoblastoma protocol slated to begin this sum- have no vision problems, so her parents had not mentioned mer. The study is designed to determine the best treatment the spot to Hannah’s pediatrician. for children with the disease, to further study the biology of the disease, to discover why some children develop the Unanswered questions Unilateral retinoblastoma is a malignant tumor that occurs in one eye. The treatment for children with Retinoblastoma is the genetic syndrome with the highest risk of cancer. Preschooler unilateral disease is simple: the eye Hannah Williams has a 40 percent chance of developing another cancer. If she has disease in utero and to determine how children with the tumor is removed and if a children, they will have a 50 percent chance of developing the disease. with retinoblastoma think and learn. the cancer has not spread, the child For decades, retinoblastoma was treated prima- does not need follow-up treatment. rily with enucleation (eye removal) or radiation. Bilateral retinoblastoma can Shared The new protocol will test the chemotherapy occur in one or both eyes and can drugs topotecan and vincristine, which are often involve one or dozens of tumors. In used in conjunction with lasers, freezing tech- this kind of retinoblastoma, tumors niques and implantation of radioactive seeds, may break away from the main especially for cases of more advanced disease. mass like seeds blown from a dan- The goal is to prevent enucleation and to avoid delion and remain suspended in the or delay radiation therapy, which has many nega- fluid of the eye called the vitreous. BY VICTORIA TILNEY MCDONOUGH tive side effects for children who are growing These tiny tumors, or “vitreous Vision and developing. seeds,” can be difficult to treat; in the gel-like vitreous they move and spread the way mercury spilled St. Jude focuses on finding new Anew St. Jude protocol will address the best treat- from an old thermometer divides ment for children with retinoblastoma, study the biol- ogy of the disease, investigate why some children into countless balls of silver. treatments for retinoblastoma develop it in utero and explore how children with Twenty-five percent of children retinoblastoma think and learn. Nurse Terry Deaton, diagnosed with bilateral retinoblas- a member of the multidisciplinary team, talks with 3- year-old Jalen Edwards.

14 Promise / Spring 2004 Spring 2004 / Promise 15 retinoblastoma. Socioeconomic conditions also BY VICTORIA TILNEY MCDONOUGH Early detection can save eyes and lives seem to play a role. But the questions remain, and we hope to find more solid, consistent answers.” Sitting in a St. Jude waiting area with their daughter, Ray Williams pointed to a poster Rodriguez-Galindo attributes much of the pro- picturing a little girl with curly dark hair and a strange white spot in one of her eyes—

gram’s current success and knowledge to the late PHOTOS BY LAURA HAJAR bright and reflective. He said to his wife, “Oh, Missy, that’s just like Hannah. If only we’d Charles Pratt, MD, a senior pediatric oncologist at known what it was so we could have recognized it earlier.” St. Jude, who treated patients for more than 30 Since that day, Missy has often thought about that poster. “If we could mail it to years and was the primary designer of the hospi- every pediatrician’s office it would save so many children,” she says. “It would help their tal’s current protocols. parents notice and act, help them catch the disease early. I’d never heard of retinoblas- “Sometimes things come out of studies that you toma. I didn’t even know there was a cancer of the eye. I wish that we could educate don’t expect,” says Stephen Skapek, MD, every new parent about retinoblastoma. Education is the key. The earlier you find out, the Hematology-Oncology, who is also involved in the better. It would save more lives, more eyes …” Philadelphia protocol. “Sometimes you learn through secondary markers, not through the ‘ah-ha’ Retinoblastoma warning signs answers. It’s an important study. Sometimes it is *A white reflex, known as a cat’s eye reflex, appears in a child’s eye. Often this is evi- hard to put all the pieces together to get answers, dent in a photograph taken with a flash. In this age of digital cameras and computer but you have to try.” graphics programs, it is easy to touch up a photo and eliminate a “flaw.” Noticing With a disease like bilateral retinoblastoma come such a flaw can save a child’s life. the difficult genetic questions. If a child has this * The eyes are crossed or turn in or out slightly. cancer, do the parents want to be tested? What will *A child has different colored irises—for example, one blue eye and one brown eye. they do with this information? Will they share *A child complains of not being able to see or focus, or bumps into things. genetic details when their children are older? “We are concerned about the lack of communi- “Right now, we are saving some 70-80 percent of the eyes, cation when it comes to retinoblastoma,” says Rodriguez- but we still have to irradiate maybe 30-40 percent of them,” Galindo. “For example, we recently had two new babies here says Rodriguez-Galindo. “We want to take that number way with retinoblastoma. Both had affected parents. None of them down.” Currently, enucleation and radiation are the only ways was aware that they would pass it on to their children. to treat vitreous seed tumors. “Maybe people block out this information, or the parents or The protocol will also explore the cognitive development of grandparents die so the later generation never knows about the children with retinoblastoma. “There is a lore about kids with genetic history. Or maybe parents don’t want to tell their kids, retinoblastoma that they are above average in intelligence,” and 20 years later they have forgotten or they think it’s better to says Sean Phipps, PhD, Behavioral Medicine. “This is curious forget. These kids need to know their genetic history. They also when you consider that some will have impairments or have need to know that they have a 40 percent chance of developing faced invasive therapies at a very young age. To date, this is another cancer. Retinoblastoma is the genetic syndrome with the just a clinical impression and has not been rigorously tested. highest risk of cancer.” This study gives us a unique opportunity to examine the neu- ropsychologic development of children with retinoblastoma, and to explore possible factors associated with their high level Looking ahead of functioning.” A spunky little preschooler, Hannah Williams looks no differ- Many St. Jude patients are also involved in a protocol led ent from any other girl her age. Even her hazel-green eyes don’t by a team at Children’s Hospital in Philadelphia. The multi- give her away—one real, the other created just for her. Because Flipping institutional study involves blood tests and questionnaires filled Hannah’s disease was advanced at the time of diagnosis, she lost out by parents of affected children. her right eye. She endured two rounds of chemotherapy, and the “We are interested in finding out why 75 percent of these tumors in her left eye were also treated. through the children develop the mutation in utero,” says Rodriguez- Missy Williams says she will have some serious talks with Galindo. “Are there environmental factors? Are welders or her daughter when she is older. She will tell Hannah that she has smokers, for example, more apt to have children with retino- a high chance of developing another cancer or passing the muta- Pages of a blastoma? There have been a few documented reports, a few tion to her own children. LIFE patterns, but nothing consistent. We know there are some ethnic For now, Missy and her husband are concentrating on the pres- differences: people of native-American ancestry, those in Central ent. “Nothing gets in Hannah’s way,” says Missy. “And we try Parents of St. Jude patients chronicle their journeys in scrapbooks. America, and those of more native backgrounds along the North never to hinder her. We always encourage our little angel baby to and South America continents have higher incidences of try anything—to accomplish whatever is in her head and heart.”

16 Promise / Spring 2004 Spring 2004 / Promise 17 trip on a Mississippi Amy Kennedy and Melinda Hugie, brows, his face puffed from the drugs, Priceless coffee-table book another year to go before he is consid- River boat. Child Life specialists, started the and they marvel, just like I do, at my Jennifer Farrar keeps her scrap- ered cured. Soon she started hospital’s scrapbooking class in boy. He’ll always have the scar on his book-in-progress on the coffee table at putting them in a January 2002. chest from his Hickman line to remind home. The book includes hundreds of scrapbook. Like a “Storytelling can be very power- him where he’s been and what he’s photos of Jackson, his immediate fami- The power of memory travel journal that ful,” Sebaugh says. “Two people may come through, but I think the scrap- ly and his St. Jude family. Among the Although many scrapbooks tell recounts destina- have the same experiences and tell the book will also show him what kind of photos, drawings and clips, Jennifer visual stories with photographs and art, tions, activities and story totally differently. This interpre- person he is, what kind of boy he is, has written facts, thoughts and dreams. words play a key role. thoughts, Jennifer’s tation can influence their lives, influ- and later what kind of man he is.” One page features a photo of Jackson When Tammy Warren looks at her scrapbook unfolds ence how they make decisions later in The scrapbooking class offers a with singer Amy Grant. Another shows scrapbook, she can remember an exact her son’s St. Jude life or, ultimately, how they view time when parents can share creative him swinging on the playground moment, the ebb and flow of her feel- journey. “Jackson themselves as human beings.” ideas, but more importantly, their behind Target House. ings in that one prick of time. was so little when he Sebaugh set out to form a group stories and experiences. “The two- “This picture,” she says, “Sometimes, I simply identify who was diagnosed, just with an activity and no stigma. “Many hour, bimonthly class is really one of “shows Jackson playing and what is going on in the 2,” says Jennifer. people believe that if they are in the few times parents have to be away with a toy kitchen in the photo, but other times I write a “I hope he doesn’t a support group that from their kids, to have the freedom to area where he had his lot,” she says. “The combina- remember what he something is talk adult-to-adult,” says Sebaugh. “It’s bone marrow transplant. tion of the images and the has had to go wrong,” she a time to talk about what their child The nurses knew he words can show you how you through. And explains. “Some and their family have been going loved it so they moved it felt in that moment. It’s as if yet, in some people stay away through with others who understand; in there for him. I wrote your exact thoughts and dreams are ways, I want him from support it’s a time to process grief, anger, sor- under the picture how much he loved frozen in time.” to remember. I groups because of row, hope.” playing with the toy pots, pans and Art therapists say that scrapbooking want him to know that reason.” The Held at Target and Ronald utensils. He’ll probably laugh later, enables people to express themselves that God is good. I scrapbooking class offers McDonald Houses, as well as at the when he’s older, and say: ‘Mom, what through both words and images, want him to know parents a time to be with other St. Jude hospital for parents whose children are a girly toy! I can’t believe I played accelerating the process of emotional about the disease he parents, to share their stories and to inpatient, the class has also been help- with that!’” healing. “A lot of the therapeutic activities at St. Jude are appropriately geared beat and what a voice their feelings of grief, loss or ful to parents when the child of another When Jennifer shows the scrapbook “Whenever I look at my scrapbook, for patients and their siblings. But there was a need for parents to have an outlet for expression,” says Amy Kennedy of Child Life. “The scrap- strong and coura- love while making something tangible family dies. “They can process their to friends and family, especially those I cry,” says Jennifer Farrar. “It makes booking classes are a place to exchange ideas, experiences and helpful geous little boy he about that story. feelings, share their fears, talk about who weren’t able to visit Jackson at me grateful, thankful. I know how far hints with other parents in a non-threatening environment while creating was to endure all that The importance of the scrapbook how the death will impact their own St. Jude, the tears flow. “They are okay we have all come and I thank God that a legacy tool to tell their story.” Here, Kennedy examines the scrapbook he had to endure. I lies not in the book itself, but in the child,” says Sebaugh. Narrative therapy until they get to the photos of Jackson Jackson has done so well. of Jennifer Farrar and her son Jackson. want him to remem- process of creating it, of telling the ill- provides a context for asking questions following his bone marrow transplant, “As hard as it’s been, I want to ber his doctors and ness story with words and images. about what is not and then the ones of him on a ventila- remember everything from this time. Before May 2002, photographs, nurses, all his friends at St. Jude; the “This is a journey,” Sebaugh says. often ques- tor,” Jennifer says. “They cry. I tell God brought us through this for a rea- drawings and ticket stubs were just bits experience is a part of who he is. I “The scrapbook is a way of telling the tioned. For them it gets better … like a movie I’ve son and I can’t let that be forgotten. of paper to Jennifer Farrar. want him to have this scrapbook story of that journey.” many fami- already seen.” Jackson was given an The book is very special to me. I hope She enjoyed looking at forever so he can remember what a lies, the 8 percent chance to live. He has passed Jackson will cherish it, too, when I family photos, remem- hero he is and how much his family book pro- one year without relapse and has give it to him when he’s older.” bering certain birthday loves him.” Cutouts and conversations vides a pal- parties or special Although Jennifer had completed the Even though her scrapbook is not pable way to events. She’d smooth first few pages of her scrapbook, it finished, Tammy Warren likes to flip remember. “A her fingers over the wasn’t until she joined the through its pages and ponder how far scrapbook helps a fami- edges, smile at the mem- “Scrapbooking Class for Parents” at her family and her 8-year-old son, ly remember all the details. With it, ories then put them away St. Jude that she truly understood the Tyler, have traveled in less than two they don’t have to worry that they will until another day. deep significance of the scrapbook and years. “Already I can’t imagine how forget,” Sebaugh says. “Especially for But after her son came to St. Jude the process of creating it. we got through everything we have,” families who lose their children, the Children’s Research Hospital with she says. “Later, this book will really fear of forgetting can complicate grief. acute myeloid leukemia, Jennifer start- be something for Tyler to look at. He’ll Having the scrapbook helps them ed photographing him, his medical Start with scissors see how young he was, and how brave. heal and remember the joys and sad- team, the hospital, and events of all Scrapbooking can be considered a “Friends and family back home nesses, the life.” sizes, even quiet day-to-day moments. form of narrative therapy, which who look at the scrapbook can’t She saved newspaper clippings and assumes that people are the experts in believe what he went through,” she ticket stubs from the family’s out- their own lives. Jill Sebaugh, a domi- continues. “They see the pictures of ings—a Memphis Redbirds game, a ciliary social worker at St. Jude, and him bald with no eyelashes or eye-

18 Promise / Spring 2004 Spring 2004 / Promise 19 Seeking a magic combination LAURA HAJAR Although doctors have been treating retinoblastoma for more than a century, no one has yet pinpointed a definitive treatment. The laboratory models created in Dyer’s lab will help St. Jude scientists test chemotherapy drugs for retinoblastoma. To speed the process, the researchers are testing drugs that have already BenchBench toto BedsideBedside been successfully used to treat other kinds of childhood cancers. Methodically, the scientists try different dosages, various combi- nations and different lengths of treatment. Then they test Children with retinoblastoma reap the benefits of basic laboratory research. whether or not the drug actually travels to the tumor in the eye. “Before we began this project, nobody had systematically tried drug after drug in combination to figure out which are the Today many organizations use the term “bench to bedside” to thought about trying out this drug?’ but I can give them results best ways to go,” says Dyer. Many drugs that might work for describe their programs. But the concept was born 42 years ago before they ever get published,” Dyer says. “Things move much medulloblastoma or neuroblastoma are perfect candidates for in a tiny hospital in Memphis, Tennessee. There, basic scientists quicker here than they would anywhere else.” retinoblastoma because these cancers have many similarities. and physicians worked in tandem to translate laboratory discov- St. Jude clinicians help basic scientists factor in the possible eries into cures. From its humble beginnings, St. Jude Children’s side effects of drugs. “There might be a fabulous drug for treat- Research Hospital created a worldwide model for bench-to-bed- Back to basics ing and killing these tumor cells but the child can’t tolerate it,” side research. The retinoblastoma gene was the first tumor suppressor gene Dyer says. “So in those cases, it just gets cleared off the slate; Nowhere is that success story more evident than in relation to cloned in humans, and the mutation that causes the disease we don’t end up wasting our time.” retinoblastoma, a malignant tumor of the retina. When the late involves one culprit, the Rb gene. An individual with an Rb When Dyer finds a promising drug combination, an interdis- Charles Pratt, MD, began treating children in the early 1960s, mutation is much more likely to develop retinoblastoma than is a ciplinary team considers its inclusion in upcoming treatment Tcancer research was in its infancy. “The drug options person who does not have the mutation. But the dis- plans for St. Jude patients. The new retinoblastoma protocol slat- were so limited that I carried my medicines ease’s origins remain an enigma. “You would ed to begin in the summer of 2004 incorporates topotecan and around in an old Seagram’s Crown Royal think that we would know a lot about vincristine, two drugs that underwent extensive testing in Dyer’s bag,” said Pratt, a St. Jude physician retinoblastoma,” Dyer says. “But the sad laboratory. But Dyer is also hoping to continue screening 12 or who pioneered many chemotherapy thing is that we know very, very little— more drug combinations per year, in a constant search for the agents used to treat retinoblastoma and in fact, I would say almost nothing— ultimate treatment. other cancers. about what happens to make these “Before this, Carlos and Barrett would look through the liter- Today, St. Jude researchers harness cells become tumor cells.” ature and make a best estimate on what might work,” Dyer says. technology and knowledge to give Dyer and his colleagues have “Now they’re going to have a huge amount of data to base that clinicians a vast array of treatment developed new laboratory models to on, and we’re going to closely follow the children. Do they options. Michael Dyer, PhD, an help them track the genetic changes respond the same way that cells do in assistant member of Developmental that occur in cells after Rb is mutat- culture? We can go from a dish with Neurobiology, leads a team that is ed. By studying the basic biology of tumor cells in it to a laboratory model

studying normal development of the the tumor cells, Dyer hopes to create SETH DIXON to a patient and back again; I don’t retina as well as testing new treatments cancer therapies that target specific know of anywhere else where that hap- for retinoblastoma (see related stories, pathways or proteins. Such treatments pens in such an efficient way. Without pages 4 and 14). Dyer says the proximity would eliminate the sickness and side that connection, we would just be of his lab to the clinic makes research more effects that accompany general chemo- doing this blind, and we wouldn’t have exciting and relevant to patients. therapy. Many scientists believe that the vast that important feedback. “At other institutions, I might do all majority of cancers may involve a “St. Jude provides a wonderful sort of This image shows the extent to which retinoblastoma the same experiments that I do here, but can infiltrate a child’s eye. In this cross-section, the mutation in the Rb pathway. That’s environment to do these kinds of I would just publish my findings and lens is at the top, the optic nerve extends downward why many retinoblastoma patients things,” Dyer continues. “It’s an amaz- hope that somebody would actually at the bottom and the dark purple portion extending have an increased chance of develop- ing place; it really is.” apply what we have found,” says Dyer, throughout the center portion is a large tumor. ing other types of cancer, as well. who engages in a nearly constant dia- By studying the molecular Discoveries made in the labora- logue with Carlos Rodriguez-Galindo, MD, of Hematology- changes that give rise to retinoblastoma, St. Jude scientists hope tory of Michael Dyer, PhD Oncology and Barrett Haik, MD, of the St. Jude Eye Clinic. to broaden their understanding of normal retinal development (above), are quickly translated into treatments that help patients “Not only are Carlos and Barrett saying, ‘Hey, Mike, have you and of developmental tumors of the central nervous system. such as Hannah Williams, pic- tured here with Carlos Rodriguez-Galindo, MD. (See related stories, pages 4 and 14.) BY ELIZABETH JANE WALKER

20 Promise / Spring 2004 Spring 2004 / Promise 21 Although they knew that their listeners “The Hispanic community has enthusiastically would support St. Jude, many broadcast representatives were surprised by the embraced the dream of Danny Thomas that ‘no amount of giving they have seen. “We were initially overwhelmed by child should die in the dawn of life.’ With the help the support that we received from our lis- teners,” Ortiz says. “It is unbelievable of Promesa stations and their listeners, St. Jude that in the past three years we have raised continues to lead the battle against childhood more than $2.1 million in cash and pledges for the kids of St. Jude.” Ortiz’s catastrophic diseases.” station raised $832,066 during its latest radiothon in February 2004. Modeled after the Country Cares for the hospital’s fund-raising arm, launched tions have raised more than $12 million St. Jude Kids radiothons, Promesa pro- a Spanish radiothon program. In in pledges to help los niños del St. Jude. vides stations with everything they need September 1997, Promesa y Esperanza And the numbers continue to grow. for successful two-day radiothons, from (Promise and Hope) was introduced at WADO-AM 1280 in New York joined brochures to volunteer phone operators to KXEK-AM in Fresno, California. with St. Jude three years ago to help, in Spanish-speaking St. Jude families who “We realized that it was very impor- the words of Danny Ortiz, “the most help- can give listeners first-hand accounts of tant to get the message of St. Jude out to less and innocent victims of all children what the hospital means to them. the community at the local level, and with catastrophic diseases.” Ortiz, pro- “St. Jude had pioneered radio fund- radio allowed us that great opportunity,” gram director for WADO, says the mes- raising through Country Cares and we Supporters and staff of La Ley and Onda radio stations says Lucia Heros, of ALSAC Hispanic sage of St. Jude resonates with the values tested the formula with Spanish-language celebrate the conclusion of their radiothon. The event Marketing. “We needed to educate the of his station’s listeners. radio—and it worked,” Heros says. “The eventually raised more than $936,000 in pledges. community about St. Jude, raise money “Hispanics are passionate, empathetic phones rang and the community came out and create a way that made it easy for and very loyal toward issues that really mat- to support the kids, and their generosity people to give.” ter, like education, family, health and child- was overwhelming.” Since then, 79 stations have become hood diseases,” he says. “These important That generosity continues to grow. members of the Promesa family that issues definitely strike the emotional chord In December 2003, the Hispanic commu- stretches from Los Angeles, California, to and make listeners want to pick up the nity in Chicago showed its generosity Miami, Florida. Working together, the sta- phone and help make a difference.” by pledging $936,135 during the first radiothons hosted by stations La Ley and Onda. “We are truly grateful for the commit- Promesa y ment and support we have seen from our radio stations, La Familia Promesa y B Y J OE H ANNA Esperanza,” says ALSAC’s Radio and Entertainment Director Teri Watson. “The Esperanza… Hispanic community has enthusiastically embraced the dream of Danny Thomas a SOUND Contribution that ‘no child should die in the dawn of life.’ With the help of Promesa stations and their listeners, St. Jude continues to Spanish-format radio listeners raise millions for St. Jude Children’s Research Hospital. lead the battle against childhood cata- strophic diseases.”

THE HISPANIC population in the In the early 1990s, this new radio for- markets. But Spanish radio isn’t just a United States has been booming since the mat erupted across the airwaves of the format to be lumped into categories such 1980s. According to the latest census, broadcasting industry, pushing what had as hard rock, easy listening or sports Hispanics are now the largest minority been a sporadic radio genre into a phe- talk; Spanish radio is also an important population in America. The popularity of nomenon that can claim at least one sta- medium for delivering cultural messages. Spanish-format radio has increased as the tion in almost every major U.S. city, Recognizing the philanthropic poten- Latin Star Mia and St. Jude patient Arturo Meza join the staff of Onda population has grown. including each of the nation’s top 20 radio tial in the Hispanic community, ALSAC, to raise money to fight childhood cancer.

22 Promise / Spring 2004 Spring 2004 / Promise 23 Perspective LAURA HAJAR The Hope and the Promise

By Jimmy Naifeh In the end, how should we judge success?

to children became the other folks at ALSAC/St. Jude who St. Jude Children’s concentrate on fund-raising do an out- Research Hospital. standing job. It is vitally important to Years ago, there was support the hospital. I try to do my talk of the hospital part. One example is through a golf being moved to tournament. St. Louis. Early one In 1993 I approached the Rural West morning, I flew with Tennessee House Democratic Caucus then-Gov. Lamar with the idea of sponsoring an annual Alexander, Lt. fund-raiser for St. Jude. Representative Governor John Wilder Randy Rinks (D-Savannah) took up the and Speaker of the challenge and, along with the rest of the House Ned McWherter members of the caucus, we began a golf to a St. Jude Board tournament at Pickwick with proceeds meeting in Memphis. dedicated to St. Jude. We not only raise After that meeting, the $60,000 to $80,000 a year at that tourna- Board was invited to ment, but we also raise awareness about Nashville to be honored the St. Jude mission and the tremendous on the floor of the scope of children served. House of There are patients from all parts of the Representatives. Danny world treated each year, and since it was Thomas and Ned first established, more than 20,000 chil- Jimmy Naifeh, Speaker of the Tennessee House of McWherter exchanged dren have received services. But in the Representatives, is a member of the ALSAC/St. Jude expensive cigars end, I do not believe that numbers alone A slam-dunk for St. Jude kids Boards of Directors and Governors. (Danny’s cigar was are a measure of our success. NBA basketball stars Shane Battier and James Posey celebrate the obviously more expen- In the end, how should we judge suc- grand opening of the Memphis Grizzlies House with team mascot sive than Ned’s). From there, the Board cess at St. Jude? “Grizz” and St. Jude patient Valery Young. As a small child growing up in rural went to a reception at the governor’s resi- Judge success not only by the lives “We (the Grizzlies) have the opportunity to be champions every day,” West Tennessee, I first learned from my dence. Thankfully the state’s cooperation that are saved and the children who are Battier told the audience at the grand opening celebration in January. dad about plans to build a hospital in was assured, and St. Jude remained in served, but also by the hope we radiate “Trying to defend (Los Angeles Lakers star) Shaquille O’Neal is noth- Memphis dedicated to helping children Memphis. and the promise that someone cares. ing compared to the struggles that patients and families at St. Jude go with catastrophic diseases. This hospital Since 1985 I have had the honor and through every day.” would serve children even if their families privilege of serving as a member of the Located on the St. Jude campus, the Memphis Grizzlies House pro- did not have the money to pay. ALSAC/St. Jude Boards of Directors and Jimmy Naifeh is Speaker of the vides a comfortable environment for patients and families who are The plans and vision for this hospital Governors. It has been one of the most Tennessee House of Representatives. He undergoing treatment at the hospital on a short-term basis. The were those of Danny Thomas, who like rewarding and fulfilling experiences any Memphis Grizzlies pledged $5 million toward construction of the was first elected to the House in 1974 my family, was of Lebanese descent. I person could ask for. $10 million facility, which can accommodate up to 100 families at a and has served as speaker of that body was proud to know that people of my her- As I said earlier, St. Jude does not turn time. The Bombay Company, also a St. Jude partner, donated more than $130,000 worth of furnishings to the Memphis Grizzlies House. itage were giving back to the country that children away because their families can- since 1991. He is married and resides in had welcomed us with open arms. In not pay. To do this requires a tremendous Covington, Tennessee. He has three chil- 1962, this vision of a hospital dedicated focus on fund-raising. Dick Shadyac and dren and three grandchildren.

24 Promise / Spring 2004