Amazing Kids Fall 2013 by NFM + Dymun

amazlngklds FALL 2013

Remembering the Past... Shaping the Future inside Expanded Services: Outpatient Behavioral Health Generations of Donors • Where Are They Now? • Fall Annual Appeal

Fall 2013

feAtures

inside

A looK bAcK

Over a century of service creates a foundation for the future.

behAVioriAl 14 outpAtient heAlth serVices

The Children’s Institute expands its continuum of care to offer outpatient behavioral health services.

fAll AnnuAl AppeAl

Learn more about how you can help our amazing kids.

depArtments 15

Where Are they noW?

neWs briefs

donor profile

donor eVents

WAiting Kids

community cAlendAr

shAring our KnoWledge

boArd of directors

AmAzing Wish list

on the coVer

After suffering a traumatic brain injury, RJ came to The Children’s Institute in a coma, and was an inpatient for seven months. This vivacious youngster made huge progress and is now thriving in outpatient therapy.

amazlngklds A publicAtion of the children’s institute

credits david K. miles, med, mpm President and CEO 412.420.2398 dmi@the-institute.org helene conway-long, mbA, cfre Vice President, Institutional Advancement 412.420.2201 hcl@the-institute.org erica tony Marketing and Communications Manager 412.420.2479 elt@the-institute.org Writing Cosgrove Communications, LLC

SINCE 1902, The Children’s Institute of Pittsburgh

design Dymun + Company

has dedicated itself to supporting the life needs of children and families with special needs.

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photography Josh Franzos Anna Lee-Fields

milesahead Dear Friend,

As The Children’s Institute of Pittsburgh prepares to launch more of the initiatives outlined in our strategic plan, Vision 2016, it’s appropriate to look back at our first 111 years — and that is what we’ve done in this issue’s main story. You’ll see that from our founding to meet the needs of one child… through the ravages of the polio epidemic… to advocating for our convictions as the causes of autism were debated… all the way up to today, those years tell a tale of change, drama, growth, responsiveness and a willingness to evolve in productive — and sometimes surprising — new ways. Today the pace of change is accelerating: this is a time of great medical advances, economic pressures and societal transformation. Along with those external influences, we see dramatic increases in the acuity and complexity of the kids we treat in The Hospital and educate in The Day School, and for whom Project STAR finds “forever homes.” Amid all the changes, our responses must still be individualized, effective, timely, compassionate — and more creative and efficient than ever. With support from the community, leadership from our Board and dedication from our staff, we will continue to deal successfully with changes and challenges as we implement our strategic vision, achieving our mission the way we did when we began: one child at a time.

Sincerely,

David K. Miles, MEd, MPM President and CEO

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Emile Terrenoire (bottom row, far left) and some of the first children who received treatment at the Industrial Home for Crippled Children. â&#x2013; 4 | AmazingKids FALL 2013

Over A

century

Of servIce,

a foundation for the future

T BEgAn, AS MAnY gOOD THIngS DO, with a perceptive mind and an open heart. The year was 1902. Emile Terrenoire, 5, had lost both legs in a tragic accident, and his widowed mother wasn’t able to provide the extensive care he needed upon his release from the hospital. The little boy’s future hung in the balance. A kind and capable woman named Mary Irwin Laughlin heard of Emile’s

plight. She learned that there were other children in similar straits — and immediately gathered some like-minded friends to develop a long-term solution. It wasn’t long before the balance was tipped, with Emile among several children receiving the era’s most advanced medical and nursing treatment, a good education and warm caring in a gracious home on a quiet East Liberty street.

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Those early days at the “Memorial Home for Cripple(d) Children” laid a strong foundation for today’s Children’s Institute of Pittsburgh: responding to real needs, and treating not just a disability but an entire young person. The Home grew rapidly. By 1905, it was relocated to Squirrel Hill — the beginning of today’s campus — and by 1908, as policymakers saw that the Home met needs not addressed elsewhere, one-third of the budget came from a State appropriation. The rest came from open-hearted donors.

n 1916, a historic polio epidemic ravaged the country. Entire families were quarantined, fearful people avoided public places and 25% of those afflicted died. Those who survived usually needed extensive care — and the Home responded. Soon up to 75% of patients were “infantile paralysis” survivors, and they received the latest and best treatments, including physical therapy, massage therapy, hydrotherapy, bracing and orthopedic Former resident surgeries. of the Home, A social worker and Paul Downs, co-founder a psychologist joined of Schneider-Downs. the staff to help patients and families deal with emotional issues and to smooth the transition between the Home and home, and soon professionals from the new fields of occupational and speech/language therapies helped prepare young patients for independence. Some of the children and youths were well enough to attend Pittsburgh public schools, and teachers from the school system came to the Home to teach those unable to leave. Paul Downs, 9, was one polio patient who thrived. He was a handsome, strong lad who didn’t let his wheelchair slow him down. He lived and received treatment at the Home for years, attending Schenley High School and ultimately graduating from the University of Pittsburgh. Later, he co-founded the accounting, tax and business advisory firm that became

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He sPOKe AffectIOnAteLy Of tHe cAre He receIveD, AnD tHe KnOWLeDGe AnD vALues tHe HOMe HeLPeD HIM DeveLOP

nationally known as Schneider Downs. Through his adult life, he spoke affectionately about the care he received, and the knowledge and values the Home helped him develop.

olio was conquered in the 1950s thanks to work done in Pittsburgh, primarily by Dr. Jonas Salk. Meanwhile, other medical advances promoted the survival of babies with congenital issues and children with severe trauma. As a result, the Home began to see more patients with issues such as head injuries, cerebral palsy, spina bifida, and significant developmental disabilities. The change in patient population required an even more comprehensive range of highlevel medical, educational, social, psychological and pre-vocational programs, which the Home soon implemented. A multidisciplinary team approach — which quickly drew national attention — was inaugurated, and a new “coordinator” system was created.

Helen Paytok, Rn, LPT, joined the staff in 1959 as one of the first coordinators. She says, “Our responsibility was to set up a child’s program and work with everyone involved with the child — the entire treatment team, parents, school districts, and others — to ensure that each young patient consistently received everything he or she needed to make progress, and to help make a smooth transition to home and school once that became appropriate.” Former Medical Director Dr. Anna Chorazy smiles as she recalls being taken aback by the strength of the team approach she encountered when she joined the Home in 1975. “When I experienced these teams in action, it was not like the medical model, where the physician calls all the shots,” she recalls. “nobody told me how to prescribe meds, but when it came to other aspects of a child’s program, I could be overruled. Each person thought, ‘I can make the difference for this child.’ They all thought they had the secrets. “And know what? They did. All the kids I’d referred over the years had done beautifully, often far beyond expectations — and I came to realize that the coordinated team approach, with everyone so knowledgeable, was the reason. It was a wonderful discovery. And it’s still the approach used today.”

he Home was an early proponent of the young field of “cognitive rehabilitation” — re-establishing connections in an injured brain. The newly formalized traumatic brain injury program grew rapidly and soon became a respected leader. A prestigious national head injury conference was hosted here, and staff and colleagues wrote and edited the first comprehensive book on pediatric head injury for the practitioner.

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One early patient in the program was little Peter Thornburgh, who suffered a severe brain injury in an auto accident that took his mother’s life. Peter had received plenty of love at home, but nobody referred him to rehabilitation services. Then ginny Thornburgh, newly married to Peter’s father Dick Thornburgh, brought Peter, almost 4, to the place that would change his life. That first day is one ginny will never forget. “Helen Paytok greeted us with great

warmth,” she recalls, “and soon an entire team of professionals was working with Peter. He was enrolled in the pre-school, and he received occupational, physical and speech therapies. He made marvelous progress, more than Dick and I had dared to hope.” Today in his 50s, Peter Thornburgh is a contented man and a respected member of his Harrisburg community. Although he still deals with significant cognitive and physical challenges, he lives with some independence and quiet dignity in a supervised apartment, and he volunteers every day at the Central Pennsylvania Food Bank.

sOMe InDePenDence AnD QuIet DIGnIty

Peter Thornburgh, one of The Children’s Institute’s first patients with a traumatic brain injury, then and now.

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eanwhile, education evolved at the Home. The in-house school gradually hired its own highly specialized teachers. As The Day School, it became the first private school in Pennsylvania to receive accreditation from the national Commission for the Accreditation of Special Education Services. Bill Bauer, who came to the School in 1969 as a special education teacher and retired in 2010 as Chief School Administrator, recalls his early years, when the School had only six classrooms. “Although the students dealt with issues such as cerebral palsy, many were cognitively at or near grade level,” he says. “Some played chess, most learned subjects like algebra, and most could eat and use the bathroom independently.” Some students were autistic — and, as with cognitive rehabilitation, the Home was in the

forefront of successful treatment and education. Bill Bauer says, “These were the days when most people didn’t know what autism was. Many professionals espoused the psychoanalytic theory that “MOst PeOPLe autism was DIDn’t KnOW WHAt caused by inadequate AutIsM WAs” mothering. At the Home — renamed The Children’s Institute in 1998 — we never believed that. Instead, we championed the competing theory — that autism has neurological causes — and we treated and taught the kids accordingly. Today that’s the only accepted theory.” Major changes in the law — sparked by the country’s first right-to-education suit, brought in 1971 by the Pennsylvania Association for Retarded Citizens — compelled public school

NINE-YEAR-OLD KENADEE MCDIVITT IS A MEDICAL MYSTERY. A year ago, she was hospitalized after suffering seizures. She was treated for presumed Lyme disease, and eventually recovered. Early this year, it happened again — seizures, vomiting, unresponsiveness — but this time it was even worse, and Kenadee suffered significant brain damage from the episode, leaving her in a coma and with physical and cognitive issues. She was treated and stabilized, but this time no diagnosis could be made. She came from an acute-care hospital to The Children’s Institute unable to sit, stand, speak or eat. Her vision was problematic, she had a blood clot in her left leg and she needed to be weaned carefully from the drugs used for sedation in the ICU. Along with intensive medical and nursing care, a comprehensive program of therapies began — physical, occupational and speech/language. But young people at The Children’s Institute aren’t just patients; they’re kids — so there was also plenty of recreational therapy for Kenadee, who loves Barbie, Monster High, crafts, and anything sparkly. Her months at The Children’s Institute produced slow, steady progress. Kenadee’s personality re-emerged, and she began to take a few steps and speak a few words. Today she is home in Franklin, two hours north of Pittsburgh. Still affected by her mysterious illness, she needs outpatient therapies but is enjoying life with her four younger siblings. Dr. Rachna Kapoor,

systems to accommodate students with disabilities. They began with kids whose disabilities were relatively mild — so those students no longer came to The Day School. As a result, the School increasingly enrolled students with more challenging issues. By the mid-1980s, it became clear that children with special needs in institutional settings required more adoptive homes than were available — so The Children’s Institute founded Project STAR. STAR is an acronym for Specialized Training for Adoption Readiness, a reference to the preparation needed by families preparing to adopt or foster a child with special needs. Project STAR’s caseworkers soon proved adept at identifying and preparing families willing and able to provide safe and loving homes for the kids.

A nInE-yEAr-OLd mEdICAL mySTEry rECOvErS The Children’s Institute’s pediatric hospitalist who managed Kenadee’s care, says, “She’s come a long way, and has made significant recovery.” The family is waiting for results of some genetic tests they hope will reveal the cause of Kenadee’s illness. Meanwhile, her mom Kaylee Baker says, “We were told at the first hospital that Kenadee might not survive or at least might have trouble waking up from the coma — and, if she did, she might never walk or feed herself. Now she’s accomplished all those things. She’s doing really well and we’re so glad we came to The Children’s Institute.”

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Emile Terrenoire, The Children’s Institute’s first-ever patient went on to have a fine, full life. He worked for many years at Children’s Hospital, and, along the way, married and had four daughters. In the photo, Emile is surrounded by his wife Margaret (directly behind him), and his daughters, Peggy Ritchey, Dorothy Lundy, Joan Ludchak, and Laraine Ehrlich. He always spoke highly of “the Home”, and daughter Laraine says, “He’d love what it’s become today.”

oday, 111 years since Emile Terrenoire became the first patient, the evolution of The Children’s Institute of Pittsburgh continues. Emile wouldn’t recognize today’s facility, with its extensive Squirrel Hill campus that includes an accessible playground and the stunning 10,000-square-foot eMILe terrenOIre nimick Family Therapeutic WOuLDn’t garden. Patients transferred from recOGnIze It acute-care hospitals in the quad-state region arrive at The Hospital more acutely ill and medically complex than ever. Chief Medical Officer Maryanne Henderson, DO, says, “We frequently see arriving patients, particularly those with traumatic brain injuries or severe spinal cord injuries, still in comas and on ventilators, and we see medically fragile young transplant patients who are on more than a dozen medications.” Outpatients are treated at the Squirrel Hill campus and at three satellite facilities that are more convenient for some families. Specialty programs address other needs and, along the way, develop and disseminate new “best practices.” Among the programs for example, is functional feeding for children who cannot eat because of physical and/or psychological issues, programs to treat chronic pain and concussion, and the world’s only comprehensive inpatient treatment program for Prader-Willi syndrome. Autism is a fact of life for many families today, and The Children’s Institute responds

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with a three-part program: a Hospital-based Autism Service; research; and an extensive program at The Day School — 10 classrooms that have achieved great success in helping kids “on the spectrum” greatly improve their learning, communication and behaviors.

he Day School today also has 16 classrooms for students who have multiple disabilities; five of those classrooms are for students 18 to 21, with a focus on intensive preparation for post-graduation activities — for example, earning a salary in a sheltered workshop. The School’s nearly 200 students face challenges more significant than ever; the days of chess and algebra are over. Says Chief School Administrator Cheryl Fogarty, EdD, “School districts have greatly expanded their ability to educate and care for students with disabilities — so now it is only the children and young people most severely involved, often with multiple disabilities and some even on ventilators, who come to The Day School.” tHe DAys In The Day School’s Of cHess classrooms, the staffAnD ALGebrA to-student ratio is Are Over extraordinary: one staff member per three students, and in some classrooms one staff member to two students. That is a mark both of the individualized attention students receive and of the extensive care they require.

MERCY WAS A LITTLE GIRL WITH BIG PROBLEMS. Born in Guatemala, she was adopted in America — and experienced abuse and neglect that left her with physical and developmental problems as well as severe emotional scars. Then, at 26 months, she was adopted again, this time by a terrific Latrobe family with eight other kids, six of them adopted. Mercy’s mom, Christine, says, “We were told that Mercy’s health was so poor she wouldn’t live for a year.” But the family kept nurturing the little girl, early intervention provided therapies — and Mercy slowly began to improve. Christine, a physician, came to suspect that the little girl might have another underlying condition — and she was correct. Mercy was found to have Rett Syndrome, a rare illness that causes young children to regress developmentally. It was clear that Mercy needed more than the home schooling Christine and her husband provide their other children — and the family chose The Day School at The Children’s Institute. “We did a lot of research,” Christine recalls, “and it was the only place we found that could manage a child with complex issues like Mercy’s.” At The Day School, 3-year-old Mercy began to learn — and had an intensive program of physical, occupational and speech/language therapies. Progress was slow but steady — and within a few years the child who had never taken a step was able to begin using a little walker. From that point, her progress accelerated. Now 11, she is walking independently and

LEArnIng +THErAPIES + LOvE = PrOgrESS FOr mErCy

can feed herself. She uses an augmentative communication device, and proudly demonstrates that she knows her alphabet, numbers and colors. Mercy has defied the odds. With a loving family and exceptional care and learning at The Day School, she is not regressing as most kids with Rett’s Syndrome do; instead, she is progressing. “We’ve been blessed in our association with The Day School,” Christine says. “They are excellent — so optimistic, so gifted. That’s what kids need, and they get it here.” ❖

Mercy is excelling beyond expectations at The Day School, with a great amount of support from her family, teachers and therapists.

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n recent years, the work of Project STAR has undergone a major shift — as well as expansion into several additional Southwestern Pennsylvania counties. Research has shown that kids will do better with their birth families than in foster or adoptive homes — if the birth families can be empowered, through building on their strengths and providing A sHIft: formal and informal supports, WOrK tO KeeP to provide a safe and nurturing fAMILIes tOGetHer atmosphere. The agencies that contract with Project STAR have asked STAR to help make that happen. In response, STAR has implemented several initiatives. Among them are Intensive Family Support services, designed to strengthen families in danger of losing their children and to work toward reunifying families whose children have been placed in foster care. Caseworkers provide many

AT 23, BRITTANY SINNAMOND IS THE SINGLE MOM of two beautiful little girls, Addison (called Addi), 4, and Natalie, 3. At 2, Addi was diagnosed with a rare illness called meta-chromatic leukodystrophy (MLD) — an incurable condition that causes both muscle and mental function to deteriorate. Brittany was told her daughter would not live to age 5. Overwhelmed by circumstances, Brittany was homeless, disorganized, and in danger of losing her children. Then the Westmoreland County’s Children’s Bureau called in Project STAR. The first priorities were housing and organization. Permanency specialist Jen Ambrose arranged for Brittany and the little girls to live in

TurnIng CHAOS InTO CALm — And BEnEFITIng THE KIdS

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hours of in-home instruction, coaching, and role-modeling. They also link families with community resources in areas including housing, transportation, job training and substance abuse treatment. The model Family Visitation Program, with its extensive coaching and supervised visits, is the centerpiece of reunification efforts for families whose children have been removed by the courts. Many of those supervised visits take place in the new Family Visitation Center located on The Children’s Institute’s Squirrel Hill campus. The two-family home, remodeled to allow private supervised visits by multiple families in a homelike atmosphere, promotes productive visitation. Project STAR’s reunification work has a remarkable track record: 90% of families are able to reunite in ways that are safe and healthful for the kids.

a cozy house in Vandergrift, and coached Brittany on organizing Addi’s complex schedule of medical appointments, tube feedings, and other necessities. Jen drove Brittany, who lacked transportation, to many appointments at Children’s Hospital. Other supports were put into place, including therapies and daytime nursing care for Addi, Head Start for Natalie, and in-home psychology sessions for Brittany. It wasn’t long before Brittany met every goal set by Project STAR and the Children’s Bureau, and they were able to withdraw. Today the spotless house is calm. Natalie has bounced off to Head Start, a pleasant neighbor has stopped by to say hello and Brittany is playing with Addi on the sofa. The little girl can no longer walk or see well, but she is happy, smiling at the sound of her mother’s voice and enjoying her gentle touch. Addi loves the music of Justin Bieber and Miley Cyrus, and Brittany is hoping one or both celebrities will agree to meet the child. “Our life is so much better now,” says Brittany. “I really needed help to get back on my feet. Now things aren’t chaotic, we have a home and I can focus where I need to — on taking care of my girls and hoping that Addi will be with us for a very long time.” ❖

Fred Rogers, pictured here with a former Day School student, was always a good neighbor to The Children’s Institute, frequently visiting our amazing kids.

m Judkis. Photo by Ji

success Is best MeAsureD cHILD by cHILD, fAMILy by fAMILy, DAy by DAy

fter 11 decades, the signs of success are everywhere. The Hospital holds multiple accreditations from the highly respected Commission on Accreditation of Rehabilitation Facilities (CARF). Honors and accolades are frequent for The Hospital, The Day School, and Project STAR. Members of the staff regularly speak and present at national and international conferences. Research — often in partnership with colleges and universities — is robust and productive. Success, however, is best measured child by child, family by family, day by day. Even early small achievements — for instance, a single step or word from a child who could not walk or talk — bring great joy. Despite financial stress during difficult economic times, the Hospital maintains the goal of never turning away a patient because the family is unable to pay. That is because of the extraordinary generosity of donors, and those who volunteer their expertise — on the Board of Directors and in other roles. What is next for The Children’s Institute of Pittsburgh? Some innovative new responses to recently identified needs will soon be

announced — there will be more about these in upcoming issues of this publication — and, always, constant work to ensure that today’s and tomorrow’s amazing kids and families will receive the best possible care and services… just as kids and families have for more than a century. ❖

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Outpatient Behavioral Health Services Launched a community assessment revealed an unmet health need among some southwestern pennsylvania children and young people — and the children’s institute of pittsburgh is expanding its continuum of care to address that need.

ehavioral Health Services — also called psychological services — have long been offered to young inpatients at The Children’s Institute. now, as the first step in a phased expansion of the services, they are available to existing outpatients with diagnoses of chronic pain and/or concussion. Director of Psychology Heather Ufberg, EdM, PsyD, says, “We often see children and young people who have chronic pain, and we provide support to help them cope with both the pain and the stress it causes. “Concussion can have a great impact on everyday life — for example, with headaches, light sensitivity, problems with concentration, inability to attend school and maintain a social life, fatigue and more. When those issues don’t resolve quickly, there’s a considerable adjustment process — and we help with that.” The next phases in the expansion of the services will probably include offering them to outpatients with other diagnoses, and to children and youth served through The Day School and Project STAR. Dr. Ufberg says, “Many kids with congenital and acquired health challenges have emotional issues as well as physical healthcare needs

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— and promoting both physical and emotional health is an important part of helping children and young people achieve their maximum possible independence and ability to cope in the world.” Among the services provided by the Behavioral Health staff are counseling/psychotherapy, neuropsychological evaluations and

psychological evaluations. Depending on the individual needs of the child, the clinician will use a variety of therapeutic tools and techniques such as stress management skills, behavioral therapy, parent guidance, school consultation, cognitive behavioral therapy and more. The Children’s Institute is a participating provider with the behavioral health plan networks of Highmark, UPMC Health Plan and Community Care Behavioral Health Organization. The Behavioral Health services contact number is 412.420.2362. ❖

Zakia Eberhardt, 6, is recovering from a traumatic brain injury incurred in an ATV accident. The injury produced some issues with attention and impulsivity, and Zakia worked with Director of Psychology Heather Ufberg, EdM, PsyD. The little girl has made remarkable progress, and is now continuing her recovery at home.

where

they

now CHrISTOpHEr WOLFENDALE

STOrIES OF AmAzING KIDS AND FAmILIES

“ I will be amazing.”

CHRISTOPHER THEN

REMEMBER CHRISTOPHER WOLFEnDALE — the engaging young man who smiled and said “I will be amazing” in the television spots about The Children’s Institute of Pittsburgh? Christopher first said those words back in 1997 when he was 14 and a student at The Day School. His mom Kim smiles and says, “People came up to him constantly, even when our family was out of town: once when we were on vacation

in Stone Harbor, someone said, ‘Hey! You’re that kid from TV!’” Christopher incurred severe brain damage when he was born about 3 months premature. “ They told us to make funeral arrangements,” Kim recalls quietly. But Kim and dad Jeff fought hard — and so did little Christopher. When he turned 5, his parents brought him to The Day School, where he received not only education but intensive therapies, and where his parents found some peace of mind. “It had been a difficult few years,” Kim recalls. “And I would sit in the lobby, knowing that The Day School was doing wonderful things for him, and I would think that I could breathe again… I am so grateful for how much they believed in Christopher and all they did for him.” Christopher thrived at The Day School, graduating 9 years ago. Today,

at age 30, he lives at home with his parents — his sister Brittney is a Penn State sophomore — and has aides to help him prepare for each weekday and to care for him until Kim and Jeff return from work. He is proud to earn a modest salary at the Wexford workshop run by Mercy Behavioral Health. He loves all Phil Collins music and the movie Tarzan (with music by Phil Collins, of course). And he clearly enjoys his life. Kim says, “Considering what Christopher was given, what he accomplishes every day is remarkable. I think few could walk in his shoes. He is still our amazing kid.” ❖

THE “AMAZING KIDS” ADVERTISING CAMPAIGN in which Christopher appeared has just received major recognition. The Pittsburgh Business Times asked past and present chiefs of Pittsburgh-based advertising agencies to select the most memorable campaigns created by local agencies — and “Amazing Kids” is among them. “Created by Gray Baumgarten Layport, this iconic campaign won the hearts of people in western Pennsylvania and introduced them to our amazing kids,” says Vice President of Institutional Advancement Helene Conway-Long. “The campaign served as the foundation to our current campaign, “Amazing Kids, Amazing Place” — which continues to focus on our amazing kids, along with the place where amazing isn’t just possible, it’s probable.”

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newsbriefs

This Fall, The Children’s Institute will be home to a striking new glass sculpture. As part of its summer show, “Glass in the Gardens,” Phipps Conservatory and Botanical Gardens invited well-known glass artists to provide special pieces. Among the artists was Pittsburgh’s Daviea Davis, who created 13 four-foot-tall glass mosaic towers, each depicting the work of a respected local nonprofit organization. The first tower Davis created was one representing The Children’s Institute. Much of what she saw on her visit to the campus is included in the sculpture — for example, giant blocks on which children can climb, wheels representing the wheelchairs and walkers they use, eating utensils to celebrate the milestone of a child’s learning to lift a spoon or fork — and of course exuberant giant sunflowers. After the show, each sculpture will belong to the nonprofit it depicts. Once the sculpture is onsite, The Children’s Institute will determine the location most suitable for the Photo © Paul g. Wiegman new piece of art.

Day of Giving produces Community Support The Pittsburgh Foundation’s Day of Giving is projected to produce generous community support for The Children’s Institute once again this year. Scheduled for October 3, the 24-hour Day of Giving was inaugurated to help motivate contributions to the area’s nonprofits by matching some portion of each gift up to $1,000. “We always appreciate support at any level,”says Deborah Desjardins, The Children’s Institute’s Development Director, “and we’re delighted if the Day of Giving helps the community know about the ways in which this organization benefits children and young people.”

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pirates Open Their Hearts for Kids At the start of the baseball season, Pirates Charities and ROOT SPORTS once again opened their hearts to The Children’s Institute with Wins for Kids, which benefits the Prader-Willi Syndrome Program. In Wins for Kids, fans either pledge any dollar amount they wish for each Pirates win, or make a one-time donation. This is the third year the team and ROOT SPORTS have taken The Children’s Institute’s kids into their hearts. Last year, the annual Pirates Auction on ROOT SPORTS raised $200,000 to benefit the organization

Photo by Thom Britt

Sculpture from phipps Comes to The Children’s Institute

You Can Help our Amazing Kids THIS PAST YEAR, nearly 6,000 children came through our doors — children needing help to recover from terrible accidents or illnesses, children with autism and children without homes. Their families ask us to mend, to teach, to comfort, and save the one who means the most: their child. Imagine being the parent to that child. now imagine that you are unable to pay for their care. That’s why your gift matters — and the autumn annual appeal is the ideal time to provide it. Since 1902, The Children’s Institute has provided free and uncompensated care to children whose families who have no insurance or whose insurance benefits are limited. Over the past decade alone we provided more than $40,000,000 of that care, and we could not have done so without the support of generous individuals, businesses, and foundations. That support allows us to carry out our mission of improving the quality of life for children, young people and their families — regardless of their ability to pay.

n a few weeks, you will receive a letter asking for your support. The letter will feature the story of a 5-year-old boy named RJ, who continues to recover from a brain injury he sustained a year ago. Please think about RJ and all of our amazing kids while you consider what you might be able to do. You can return your gift by envelope, make a gift online or call the development office at 412.420.2204. Our kids and families rely on The Children’s Institute, and we rely on you. Thank you for making an amazing gift!

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donorproﬁle a

Legacy

generosity H

The MacDougall family, left to right: Lizzy, Jamie, Annie, and Lanny.

“

charitable giving is important at every point in life, and i always encourage people to include the children,s institute in their estate planning. it,s an ideal way to make a final gift to these amazing kids.

”

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it WAs A perceptiVe mind And open heArt that led to the 1902 founding of the children’s institute by mary irwin laughlin — and those same qualities have persisted through generations of the laughlin family, whose members have contributed ﬁnancial support and their time and expertise.

ary Irwin Laughlin, the granddaughter of one of the founders of Jones & Laughlin Steel Corporation, quickly involved family members in the young organization. Her grandmother, Anne Irwin Laughlin, is thought to have been on the first Board of Managers. An uncle, Henry A. Laughlin, was a member of the first Men’s Advisory Board; it’s likely that his wife was one of the Home’s first Vice Presidents. Her cousin, george M. Laughlin, Jr., was a member of the Men’s Advisory Board, and his wife, Henrietta Speer Laughlin, was an early member of the Education Committee. In addition to governance, the two cousins provided considerable financial support — Mary Irwin Laughlin an endowment of $30,000, and george Laughlin a bequest of $25,000. In today’s dollars, those contributions total more than $1,200,000. Mary Irwin Laughlin had no children, but the family line continued through george. Elizabeth Shaw Laughlin, the wife of george’s son, george M. Laughlin III, was on the Board of Managers in the early 1930s. Their daughter Elizabeth married Allan MacDougall, Jr.; the young couple became the parents of children including Loraine MacDougall Miller, who recovered from polio at The Children’s Institute during the 1950s, and Allan “Lanny” MacDougall III, a member of today’s Board of Directors.

Lanny, who lives with his family in Ligonier on the farm where he grew up, is President of MacDougall Financial Counseling, LLC, specialists in advising individuals and families. He and his wife, Annie, have made several gifts to The Children’s Institute, and are charter members of the Mary Irwin Laughlin Society, which recognizes donors who have included The Children's Institute in their estate plans. He says, “Charitable giving is important at every point in life, and I always encourage people to include The Children’s Institute in their estate planning. It’s an ideal way to make a final gift to these amazing kids.” The legacy of generosity continues in the family. Lanny’s 17-year-old daughter, Elizabeth Laughlin MacDougall — called Lizzy — volunteered this summer at The Children’s Institute’s Camp Success. And not long ago Lanny and several other family members contributed two beautiful benches for The nimick Family Therapeutic garden. The Laughlin bench is dedicated to the memory of their beloved grandmother and great-grandmother, Elizabeth Shaw Laughlin. And the MacDougall bench is inscribed with what might well be the philanthropic motto of the family for all its generations over the past century: non nobis solum — not for ourselves alone. ❖

FALL 2013 AmazingKids | 19 ■

donorevents sunﬂower society donor event We can’t thank our donors enough for providing direct and immediate support to our amazing kids and families. On June 25, we took the opportunity to thank members of the Sunflower Society at a reception held in the beautiful Nimick Family Therapeutic Garden. The Sunflower Society recognizes generous donors who make a commitment to The Children’s Institute of $1,000 or more during one fiscal year. For more information about becoming a member of the Sunflower Society, please contact Lauren Vermilion at 412.420.2204, or lve@the-institute.org.

Sunflower Society members Kevin and Patricia Cain, pictured with David Miles, President and CEO.

Jim and Judy Williams chat with former inpatient Davanna Feyrer and her parents, Dave and Minetta, all members of the Sunflower Society.

Sunflower Society members Jim and Carla Wilding.

Donor Jim Williams, father of a former Day School student and Children’s Institute research volunteer, shared his family’s inspirational story.

remember us in your Will or trust! You can create your own amazing legacy of hope for children with complex needs by including The Children’s Institute in your will or trust. Visit www.amazingkids.org/ plannedgiving or contact Jill Murchak, Development Manager for Leadership & Planned Gifts, 412-420-2173 or jxm@the-institute.org for more information.

ligonier golf outing event “Golf for Autism” was held on June 22 at Seven Springs Golf Course to raise funds for The Day School in honor of Mackenzie Evanovich, a student in The Day School's Autism program. Many came to show their support for Mackenzie and all of our amazing kids by raising over $2,000!

One group of golfers enjoying the outing.

■ 20 | AmazingKids FALL 2013

Mackenzie with her father, Michael.

waiting kids

children shine brightest in families. whether the goal is adoption or reuniﬁcation with birth families, project star does everything possible to place children with safe, nurturing, forever families. these children are just two of the many who are waiting for homes to call their own.

Aaron, 14, would love to have a forever family and an older brother or sister to hang out with and look up to. He is courteous and gets along with his peers at school, where he stays focused and has a positive attitude. He enjoys playing games, watching TV and playing outside. He is willing to help out, and does best when he’s kept busy with appropriate responsibilities or activities. Aaron would benefit from a family that can provide structure and stability, first as a foster home, and later perhaps as a forever home. Aaron is legally free for adoption.

mark

is an energetic, positive 18-year old looking for a forever family that can help him meet his goals. He’s a high school student who loves the outdoors, and who thinks he’d like to be a park ranger some day. Mark would love to have a mom who can teach him to make cupcakes, and a dad who can help him be an outdoorsman, hunting and fishing and hiking in the woods. Mark would do best in an experienced twoparent family with a mom and a dad, and would be best suited as the youngest or only child. He is legally free for adoption.

For more information about Aaron or Mark, please contact Russ McCurdy at 412.420.3083 or rum@the-institute.org.

FALL 2013 AmazingKids | 21 ■

communitycalendar OCTOBEr

NOVEmBEr

1 | 9 | 16 | 23 | 30

6 | 13 | 20 | 27

Students of the dAy school dismissed at 1:30 p.m.

Students of THE DAY SCHOOL dismissed at 1:30 p.m.

Wednesday, OCTOBEr 9

Friday, NOVEmBEr 8

Grand rounds: pediatric rehabilitation

In-Service Day

the children’s institute 1405 shady avenue, pittsburgh 7:30–8:00 a.m. registration 8:00–9:00 a.m. Speaker Continuing medical Education (CmE) available. no registration is required. For more information, please call 412.420.2270

nO schOOl for students of the day school

project STAr Family Support Group potluck** mt. Olive church 2679 darlington road, chippewa 6:30–8:30 p.m.

monday, NOVEmBEr 11 Thursday, OCTOBEr 10

Veteran’s Day

project STAr Adoption, Foster Care, and respite Care Information meeting*

nO schOOl for students of the day school

the children’s institute 1405 shady avenue, pittsburgh 6:30–8:30 p.m.

Friday, OCTOBEr 11 project STAr Family Support Group potluck** mt. Olive church 2679 darlington road, chippewa 6:30–8:30 p.m.

Wednesday, NOVEmBEr 13 Grand rounds: pediatric rehabilitation the children’s institute 1405 shady avenue, pittsburgh 7:30–8:00 a.m. registration 8:00–9:00 a.m. Speaker Continuing medical Education (CmE) available. no registration is required. For more information, please call 412.420.2270

The Day School pumpkin patch Festival

Thursday, NOVEmBEr 14

Thursday, OCTOBEr 17

project STAr Adoption, Foster Care, and respite Care Information meeting*

project STAr Adoption and Foster Care Information meeting* 1598 virginia avenue, monaca 6:30–8:30 p.m.

the children’s institute 1405 shady avenue, pittsburgh 6:30–8:30 p.m.

Thursday, NOVEmBEr 21 Wednesday, OCTOBEr 23 mary Irwin Laughlin Society Luncheon

project STAr Adoption and Foster Care Information meeting*

the pittsburgh Golf club For more information, please contact Jill murchak at 412.420.2173.

1598 virginia avenue, monaca 6:30–8:30 p.m.

Thursday, OCTOBEr 31 The Day School Trick or Treating parade

Wednesday, NOVEmBEr 27 Bill Toms & Hard rain Concert to Beneﬁt The Children’s Institute Frankie’s, 5832 Forward avenue, squirrel hill

Thurs. & Fri. NOVEmBEr 28 & 29 Thanksgiving Break nO schOOl for students of the day school

■ 22 | AmazingKids FALL 2013

fall

2013

DECEmBEr

JANUArY

4 | 11 | 18

8 | 15 | 22 | 29

Students of THE DAY SCHOOL dismissed at 1:30 p.m.

monday, DECEmBEr 2

Wednesday, JANUArY 1

Thanksgiving Break

Winter Break

nO schOOl for students of the day school

Wed.-Fri., DECEmBEr 4-6

Wednesday, JANUArY 8

The Day School Holiday Gift Shop

Grand rounds: pediatric rehabilitation

monday, DECEmBEr 11 Grand rounds: pediatric rehabilitation the children’s institute 1405 shady avenue, pittsburgh 7:30–8:00 a.m. registration 8:00–9:00 a.m. Speaker Continuing medical Education (CmE) available. no registration is required. For more information, please call 412.420.2270

The Day School parent-Teacher Organization (pTO) Staff Holiday Luncheon

Thursday, JANUArY 9 project STAr Adoption, Foster Care, and respite Care Information meeting* the children’s institute 1405 shady avenue, pittsburgh 6:30–8:30 p.m.

Thursday, DECEmBEr 12 project STAr Adoption, Foster Care, and respite Care Information meeting* the children’s institute 1405 shady avenue, pittsburgh 6:30–8:30 p.m.

Friday, DECEmBEr 13 project STAr Family Support Group potluck** mt. Olive church 2679 darlington road, chippewa 6:30–8:30 p.m

Thursday, JANUArY 16 project STAr Adoption and Foster Care Information meeting* 1598 virginia avenue, monaca 6:30–8:30 p.m.

The Day School Special Olympics Bowling Event

monday, JANUArY 20 martin Luther King Jr. Day nO schOOl for students of the day school

Thursday, DECEmBEr 19 project STAr Adoption and Foster Care Information meeting*

monday, JANUArY 27

1598 virginia avenue, monaca 6:30–8:30 p.m.

nO schOOl for students of the day school

In-Service Day

mon.-Tues., DECEmBEr 23- 31 Christmas Break nO schOOl for students of the day school *Project STAR information meetings are a free opportunity to learn more about adoption, foster care, and providing short-term respite care. To RSVP for a meeting, please contact Rob Henry at 724.544.8870, 412.244.3048, or roh@the-institute.org. **Training hours are available for Project STAR family support group meetings. Children’s activities will be provided. Please note that the family support group meetings are cancelled if there are minimal RSVPs. To RSVP for a meeting, please contact Luisa Rylott at 724.775.0209, extension 6030 or lpr@the-institute.org.

FALL 2013 AmazingKids | 23 ■

shAring

OUrKNOWLEDGE Every day, staff members at The Children’s Institute help kids by putting knowledge to work. And, often, our staff members share their knowledge with colleagues — through conferences, presentations, panels, speaking engagements and other means. That’s a way of helping kids elsewhere, and helping to keep professional standards high everywhere. Each issue of “Amazing Kids” lists some representative examples of knowledge-sharing from recent months.

prESENTATION (CONFErENCE, EVENT)

pOSTEr SESSION

Melissa Fryman, CTRS Leslie Paat, MOT-OTR/L, CLT American Therapeutic Recreation Association Annual Conference, Partners in Play: Optimizing Outcomes for People with Prader-Willi Syndrome

Roxann Diez Gross, PhD, CCC/SLP Ronit Gisser, M.Sc. CCC-SLP Effects of High Dose Omega-3 Fatty Acid Supplementation on Swallowing Function in Head and Neck Cancer Patients Treated with Primary Chemoradiation

Gina Salvatori, RD/LDN Marybeth Trapani-Hanasewych, MS, CCC-SLP Matt Bittner, MS, OTR/L, OT Leslie Borsett-Kanter, MD, FAAP Erin Murray, MS, LPC 44th Annual Autism Society National Conference and Exposition, Functional Feeding: A Team Approach

WOrKSHOp

Feeding a Child with Autism: A Results-Driven Seminar, Functional Feeding: A Team Approach Leslie Borsett-Kanter, MD, FAAP Feeding a Child with Autism: A Results-Driven Seminar, An Exploration of Medical, Sensory and Behavioral Feeding Difficulties Michele Stein, MOT, OTR/L, SLT Cathy L. Brdar Tracy Fox, SLT Feeding a Child with Autism: A Results-Driven Seminar, Learning to Eat and Eating to Learn: An Integrated Approach to Addressing Feeding Issues at The Day School Scott Faber, MD 44th Annual Autism Society National Conference and Exposition, The Treatment of Micronutrient Deficiencies and Immune Issues Feeding a Child with Autism: A Results-Driven Seminar, The Treatment of Micronutrient Deficiencies and Immune Issues

■ 24 | AmazingKids FALL 2013

Kit Concilus, PT, MS, OCS Can Do MS, Program Leader, National CAN DO Multiple Sclerosis Program TEACHING ENGAGEmENT Jason Chippich, MPT, CSCS Chatham University, Adjunct Faculty, Doctor of Physical Therapy Program, Management of Pediatric Neuromusculoskeletal System Dysfunction Roxann Diez Gross, PhD, CCC/SLP University of Pittsburgh, Adjunct Assistant Professor, Department of Communication Sciences, Clinical Writing III Theresa Miller-Ferri, MPT, PCS, University of Pittsburgh, Adjunct Faculty, Graduate School of Special Education, Positioning, Handling, and Mobility

boardofdirectors 2013-2014 CHAIR

DIRECTORS

ASSOCIATE MEMBERS

Michael J. Hannon

Marshall L. Balk, MD

Nancy M. Armstrong

Michele M. McKenney

Gregory B. Benckart

Thomas J. Bachman

B. Gordon Nelson III

Romayne L. Botti

Mary Florence Brown

Barbara K. Nelson

VICE CHAIRS

J. Keefe Ellis Jr. Pamela W. Golden

Susan L. Boyle

Mrs. Davis C. Burroughs Jr.

Maureen S. O’Brien

Christina Cardoso

Paulette P. Cantwell

Judy G. Papernick

SECRETARY

Patricia Suzanne Chesko

Henry C. Cohen

James S. Pasman Jr.

Lisa C. Fagan

John R. Denny

N. John Cooper, DPhil

Ruth S. Perfido

TREASURER

Carolyn D. Duronio PRESIDENT AND CHIEF EXECUTIVE OFFICER

David K. Miles, MEd, MPM CHIEF MEDICAL OFFICER

Maryanne J. Henderson, DO

Shawn Fox

Sandy W. Côté

Patricia R. Rooney

Holly Hatcher-Frazier, EdD

Ann H. Cutter

Jean McD. Scott

Joseph E. Imbriglia, MD

George M. Egan

Lea H. Simonds

Jonathan M. Kamin

Sheila C. Fine

Ann E. Sullivan

J. A. Katarincic Jr.

Henry J. Gailliot

Harry A. Thompson II

Ellen P. Kessler

Lillian H. Goldsmith

Ginny Thornburgh

Allan MacDougall III

George C. Greer

John K. Thornburgh

James W. Marczak

Joan M. Kaplan

Jamee W. Todd

F. Brooks Robinson Jr.

Marcia L. Keehn

James W. Ummer

Susan Baker Shipley

Pradeep K. Khosla, PhD

Farley W. Whetzel

Merrill P. Stabile

Eileen L. Lane

Susan C. Williams

Nita Wadhwani

Ann M. McGuinn

Margot B. Woodwell

Front row, left to right: Lisa C. Fagan, Secretary; Michael J. Hannon, Chair; David K. Miles, President and Chief Executive Officer; Pamela W. Golden, Vice Chair; J. Keefe Ellis Jr., Vice Chair. Back row, left to right: Susan Baker Shipley; F. Brooks Robinson Jr.; Romayne L. Botti; Susan L. Boyle; Jonathan M. Kamin; J.A. Katarincic Jr.; Nita Wadhwani; Patricia Suzanne Chesko; Marshall L. Balk, MD; Christina Cardoso. FALL 2013 AmazingKids | 25 ■

ion informat For more ting funds na about do rchase u for the p ) from (s m e it of an Wish List, g in z a m A the ntact please co 412.420.2204 t . ermilion a Lauren V the-institute.org @ e lv or

amazing

WIsH LIst you can have an amazing effect on the lives of children with special needs by helping to purchase vital equipment. the children's institute's amazing wish list includes small to moderate requests that can be fulfilled with a single gift. your donation will go toward the wish list item of your choice, and as a donor, you will be listed in our annual report with the wish you fulﬁlled.*

Interactive metronome – The Hospital Even in The Hospital our amazing kids love to play! But some of our children with autism and brain injuries suffer from memory loss and short attention spans that make it hard for them to participate. This fun, game-like equipment helps children increase these skills. grant this wish to help our amazing kids get back to what kids do best — play!

$7,500

rifton Activity Chair – The Day School At The day School, we enable our students to become as independent as possible. This takes a lot of practice and the right equipment, like the rifton Activity Chair. This versatile chair can provide our students with the perfect height to work or eat at a table, and can be lowered to practice transferring skills. give our kids the opportunity to reach their greatest potential by donating today!

$3,865

Toddler Toys – The Hospital One of our favorite sounds is a toddler’s giggle! Play is at the heart of pediatric therapy at The Hospital — it helps children build strength and endurance. you can provide toys for our little ones and help them laugh while they work hard by providing this wish!

$334 13 toys

Wooden puzzles – The Hospital Occupational therapy is hard work, but at The Hospital we do everything possible to make it fun! Help our kids heal and develop their motor skills while playing with puzzles. granting this wish will provide our patients with an enjoyable activity that promotes their health and rehabilitation.

$180 set of 12

*If the final cost of an item is less than the amount contributed, any remaining funds will be dedicated to complementary needs or, if not possible, released into the general fund.

■ 26 | AmazingKids FALL 2013

didyouknow? Our dOnOrS KEEP grOWIng

tOtal number OF dOnOrs in Fy13

2,026

$3.2 mILLIOn tOtal $ amOunt raised in Fy13

161 number OF members in

Sunﬂower

Society

140

number OF members in

number OF cOrpOratiOns

mary Irwin Laughlin

who donated in Fy13

Society

number OF FOundatiOns

we received funds from in Fy13

mission

Service

The Children’s Institute is an independent, licensed nonprofit organization located in the Squirrel Hill section of Pittsburgh that is dedicated to promoting the quality of life for children, young people and their families by providing a specialized continuum of services that enable them to reach their potential.

The Children’s Institute of Pittsburgh does not exclude, deny benefits to, or otherwise discriminate against any person on the grounds of race, color, nation of origin, religious creed, disability, ancestry, sex, age, sexual orientation or genetic information in employment or in admission to, participation in or receipt of the services and benefits of any of its programs and activities, whether carried out by The Children’s Institute of Pittsburgh directly or through a contractor or any other entity whom The Children’s Institute of Pittsburgh arranges to carry out its programs and activities. This policy statement is in accordance with the provision of Title VI of the Civil Rights Act of 1964, Section 504 of the Rehabilitation Act of 1973, the Age Discrimination Act of 1975, the Americans with Disabilities Act of 1990, Regulations of the U.S. Department of Health and Human Services issued pursuant to the acts, Title 45 Code of Federal Regulations Part 80, 84, 91 and other applicable Federal, State, and Local Laws and Regulations. For more information about this policy, please contact Administration at 412.420.2400. For more information about The Children’s Institute, please call 412.420.2400 or log on to www.amazingkids.org. For TDD use, contact us through the Pennsylvania Relay Service. Voice: 1.800.654.5988 TDD: 1.800.654.5984.

The Children’s Institute was designed specifically as a rehabilitation facility, and its administration and staff are committed to increasing accessibility for all persons. If you have accessibility concerns, please call The Children’s Institute at 412.420.2485.

The official registration and financial information of The Children’s Institute may be obtained from the Pennsylvania Department of State by calling toll free within Pennsylvania, 1.800.732.0999. Registration does not imply endorsement. The Children’s Institute is a 501 (c)(3) nonprofit organization, contributions to which are tax deductible to the fullest extent permitted by law.

FALL 2013 AmazingKids | 27 ■

1405 Shady Avenue Pittsburgh, Pennsylvania 15217-1350

NON-PROFIT ORG. U.S. POSTAGE PAID PITTSBURGH, PA PERMIT NO. 748

visit our website at www.amazingkids.org Follow us on Facebook at www.facebook.com/thechildrensinstituteofpittsburgh Follow us on twitter @amazingKidspGh Please recycle this publication when ﬁnished. If you would like to be added or removed from our mailing list, please call 412.420.2203 or visit our website at www.amazingkids.org/contact. When you ask to be removed from our mailing list, The Children’s Institute will make a reasonable effort to ensure you are not contacted again. The Children’s Institute does not sell, trade or forward mailing lists.

Give an amazing gift! Over the past decade alOne we have prOvided mOre than $40 milliOn in Free and uncOmpensated care. that’s why yOur help is sO impOrtant.

In a few weeks, look for our Fall Annual Appeal letter asking for your support. While you consider what you might be able to give, please think about all of our amazing kids who work hard every day to overcome their personal challenges. The children as well as their families rely on us. And, we rely on you. Thank you for making an amazing gift!