Children’s Health | Minnesota Medical Foundation

Moving toward a lifesaving EB cure

2013-05-14T15:41:20Z

Physicians know delivering bad news is part of the job. But a diagnosis of epidermolysis bullosa (EB) can be “terrifying,” says University of Minnesota pediatric oncologist Jakub Tolar, M.D., Ph.D.

EB causes the skin to slough off at the slightest touch. Wounds don’t heal, fingers fuse together, and eventually patients are unable to eat and are wheelchair bound.

Yet kids with EB, like Keric Boyd, 10, are beginning to thrive—thanks to a new treatment approach developed at the University. Six years ago, Tolar and John Wagner, M.D., director of the Division of Pediatric Blood and Marrow Transplantation, began pursuing a novel idea—treating the disease from the inside out with a blood and marrow transplant, rather than from the outside in with bandages and antibiotics.

“Funds from the University and Children’s Cancer Research Fund gave us the kick-start that led to a revolutionary new therapy for this dreadful disease,” Wagner says.

Prior to Keric’s 2008 transplant, where his sister served as donor, his life was limited. “Our whole life as a family revolved around daily dressing changes,” says Keric’s mom, Krista Boyd, D.O.

Tolar, director of the U’s Stem Cell Institute, says that Keric was brave and notes that at that time he was only the fourth EB patient to undergo the procedure. Now more than 20 children have undergone this procedure.

Today, Keric is busy attending school, riding his bike, and participating in 4-H. His pain has decreased, his healing time is faster, and his bandages are changed just twice a week.

“He’s a totally different kid,” says Tolar. “However, it’s not a cure. We are at one point on a path to make EB a curable disease.”

Wagner concurs: “Our role is simple—we are out to cure the incurable.”

You can make a difference

Help the University of Minnesota save lives, inspire hope, and prepare the world’s future health care leaders. Make a gift today.

Because with your support, anything is possible.

Because hope can go a long way

Learn more about how you can support children’s health at UofMHope.org

Preteen songstress doesn't let CF slow her down

2013-05-14T15:39:25Z

When 12-year-old Sabrina Ness takes the stage, her soulful, bluesy voice startles listeners. Think Norah Jones or Adele. Her songwriting is just as mature.

“All of my songs are about making a difference in the world,” says Ness.

There’s a reason for that: This Stillwater, Minn., sixth-grader has been successfully defying the odds against hospitalization since she was diagnosed with cystic fibrosis (CF) at 3 months old.

This genetic disease produces a thick, sticky mucus in her lungs, obstructing her pancreas, and preventing her body from absorbing food. To combat the disease, Ness takes 35 enzymes daily and wears a CF compression vest twice a day. The vest is a novel therapy developed by CF pioneer Warren Warwick, M.D., at the University of Minnesota.

Fifty years ago, few children with CF lived to age 5; today, thanks to leaders like Warwick, those who are treated at the U’s Minnesota CF Center live more than a decade longer than the national average.

“It helps further,” says Warren Regelmann, M.D., Sabrina’s U physician and the CF Center’s co-director, “to attend a center whose doctors led the development of this treatment plan and continue to research better ways to diagnose and treat people with CF.”

Sabrina’s family is thrilled with her continued good health. “If anyone would have told me this is how she is going to do, I never would have believed it,” says mom Naomi Ness. “It really is too good to be true.”

For her part, Sabrina is planning on a long and successful singing career. She recently recorded her first CD, Revolution, thanks to the Make-a-Wish Foundation.

You can make a difference

Help the University of Minnesota save lives, inspire hope, and prepare the world’s future health care leaders. Make a gift today.

Because with your support, anything is possible.

Because hope can go a long way

Learn more about how you can support children’s health at UofMHope.org

'She is a star'

2013-05-14T15:37:30Z

It’s Tuesday and 4-year-old Addison Brynteson has just finished her weekly medical checkup. Next stop: “Anywhere with French fries and chicken strips,” jokes her dad, Joe.

Last fall, this lively preschooler was diagnosed with severe aplastic anemia, a rare condition that prevents normal blood-cell production, causing extreme tiredness, and puts patients at high risk for infection and uncontrolled bleeding.

Initially, Addy’s parents thought her bruises were just signs of an eager, if sometimes klutzy, toddler. But when she woke “with huge bruises like monsters along her side,” says Joe, they knew something was seriously wrong.

Because of the rarity of her disease, it took Addy’s doctors about a month to diagnose her. Then she came to University of Minnesota Amplatz Children’s Hospital with a new challenge—she needed a donor for a blood and marrow transplant.

“The chance of finding a perfect match in a sibling is just 23 percent,” says Jakub Tolar, M.D., Ph.D., Addy’s oncologist at Amplatz, one of the largest and most respected pediatric transplant centers in the world. Tolar, director of the U’s Stem Cell Institute, currently leads the largest U.S. clinical research trial aimed at improving stem cell transplants.

Amazingly, Cayden, Addy’s 19-month-old brother, was a match.

While the U’s team prepared the Bryntesons for a 60-day or longer posttransplant stay at Amplatz Children’s Hospital, Addy far exceeded recovery expectations and headed home on day 41.

Joe calls the family’s experience at Amplatz “unbelievable,” noting the many things the staff did to make Addy and her family feel at ease. “If there is such a thing as a smooth bone marrow transplant, we had it,” he says.

And after seeing her in the clinic recently, Tolar is thrilled with Addy’s progress. “She was playing, running around the room, and dancing,” he says. “She is a star.”

You can make a difference

Help the University of Minnesota save lives, inspire hope, and prepare the world’s future health care leaders. Make a gift today.

Because with your support, anything is possible.

Because hope can go a long way

Learn more about how you can support children’s health at UofMHope.org

The gift of Grace

2013-05-14T15:35:53Z

Grace O’Masta has come a long way from the devastating day in spring 2008 when her parents were told their month-old daughter likely wouldn’t survive the night.

Born with an enlarged and weakened heart that wasn’t capable of pumping enough blood on its own, the Eagan, Minn., girl was living at University of Minnesota Amplatz Children’s Hospital, hooked up to the Berlin Heart—a then-experimental ventricular assist device— and on the waiting list for a transplant.

Amplatz Children’s Hospital was one of only 13 sites nationwide to participate in Berlin Heart clinical trials. The device, which gained approval from the U.S. Food and Drug Administration in late 2011, takes over the work of an ailing heart until the patient can get a transplant, or until the heart becomes strong enough to function again on its own.

While on the Berlin Heart, Grace had a stroke. She had lost about a third of her brain mass and was scratched from the transplant list. She was not expected to survive. But she did—to the surprise and delight of her family and medical team.

Grace recovered and went home in July 2008, but a few years later, she went into cardiac arrest and was reconnected to the Berlin Heart while awaiting a heart transplant.

In the fall of 2012, Grace got a new heart at Amplatz Children’s Hospital. The transplant was a tremendous success.

Now 4 years old, Grace has a normal life: being in preschool, enjoying the family’s new dog, romping on the swing set, and playing (and fighting) with her sister.

“She doesn’t hurt anymore,” says Grace’s mom, Jenny O’Masta. “She’s a different kid.”

You can make a difference

Help the University of Minnesota save lives, inspire hope, and prepare the world’s future health care leaders. Make a gift today.

Because with your support, anything is possible.

Because hope can go a long way

Learn more about how you can support children’s health at UofMHope.org

MN Twins tickets to benefit U of M NF research

2013-05-02T15:09:34Z

Don’t miss Neurofibromatosis (NF) Awareness Night at Target Field on May 18, 6:10 p.m., where the Minnesota Twins will take on the Boston Red Sox.

Neurofibromatosis is a genetic disorder that affects 1 in every 3,000 people. The Minnesota Twins, along with University of Minnesota Amplatz Children’s Hospital, are joining together for a special night to raise awareness about this disorder. By purchasing tickets to this game, you’ll experience a night out with family and friends, while supporting lifesaving discoveries at the University of Minnesota—a world leader in Neurofibromatosis research. Please join us out at the ballpark for a fun night!

Grandstand seating: $25 per person.

How to order:

Call 612-33-TWINS or 1-800-33-TWINS (hit “0” to speak to an attendant). Phone lines are open during business hours and most evenings/weekends during Twins games.
At the start of your call, be sure to reference the 2013 Neurofibromatosis Night seating. Demand for seats at Target Field is high and these tickets will likely go fast… seats are available on a first come, first serve basis only.
Please provide an email address to which instructions will be sent. Simply make copies and distribute to your group.
Visa, Mastercard, Discover and American Express are accepted. A $5 service/handling fee will be added to each order.
Your tickets will arrive by mail.

You can make a difference

Help the University of Minnesota save lives, inspire hope, and prepare the world’s future health care leaders. Make a gift today.

Because with your support, anything is possible.

Because hope can go a long way

Learn more about how you can support children’s health at UofMHope.org

Children's Health

2013-04-11T17:44:22Z

Spring 2013

Designed to heal

Renovated behavioral health unit fosters recovery

They knew some of their ideas would raise eyebrows. But the clinicians who got together two years ago to plan renovations for the two-floor Child and Adolescent Mental Health and Intensive Treatment Center at University of Minnesota Amplatz Children’s Hospital felt that a big change just might make a big difference for kids.

Back from the brink of death, Eagan girl thrives after heart transplant

Grace O’Masta has come a long way from the devastating day in spring 2008 when her parents were told their month-old daughter likely wouldn’t survive the night.

Couple’s gifts support healthy children now and into the future

John and Nancy Lindahl are two of the University of Minnesota’s biggest cheerleaders. Together the two alumni successfully led a $90 million fundraising campaign for TCF Bank Stadium. Nancy also is a member of the University of Minnesota Foundation Board of Trustees, while John serves on its heart fundraising advisory committee. And through their many connections to the University over the years, they’ve only grown to appreciate it more.

University Pediatrics Scholars Award gives a lift to up-and-coming researchers with fresh ideas

One of the most important steps in pushing medical science ahead is funding talented, young researchers who bring new ideas and approaches to solving health problems. That’s the thinking behind the University Pediatrics Scholars Award, which has been given annually since 1990 to at least one promising pediatrician-researcher who’s getting a fledgling lab up and running.

Raise your glass

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We’re celebrating University of Minnesota Amplatz Children’s Hospital’s history of achieving medical firsts and breaking records tied to improving outcomes for children by attempting to break another record at WineFest No. 18.

Rock-a-bye, babies

Karen Kaler, wife of University of Minnesota President Eric Kaler, Ph.D., and Rebecca Kill, wife of head Gopher football coach Jerry Kill, rock babies in the neonatal intensive care unit at University of Minnesota Amplatz Children’s Hospital every week.

Accelerate healing by adopting a room at Amplatz

Adopt A Rooms are customizable, private rooms designed specially for kids and their families. Bedside consoles give children command of almost everything in their spacious rooms, providing the kids a sense of control during a time when they yearn for it.

About Children’s Health

Children’s Health is published by the University of Minnesota Foundation. Reader comments and suggestions are welcome. Contact the editor directly at 612-626-1941 or nendres@umn.edu.

You can make a difference

Help the University of Minnesota save lives, inspire hope, and prepare the world’s future health care leaders. Make a gift today.

Because with your support, anything is possible.

Because hope can go a long way

Learn more about how you can support children’s health at UofMHope.org

Designed to heal

2013-04-11T16:31:05Z

Renovated behavioral health unit fosters recovery

“There isn’t much medical literature about pediatric psychiatric environments, but our thinking was that the design could really contribute to care,” says program director Karen Wendt, M.A., R.N., P.H.N.

They suggested creating special rooms where kids could be active—for instance, swing in a hammock if they wanted to, or even wing across a room on a zip line. And they wanted to bring back the hospital building’s basement swimming pool that had fallen out of use because it needed expensive repairs.

The hospital administration got right on board, and ultimately, the carefully planned renovation was much more than a face-lift. New colors, attractively redesigned areas, and a range of childempowering touches have enhanced care—while at the same time addressing children’s need to move around and interact with their environment.

“We’re still discovering all the ways children are benefiting from the space,” Wendt says.

Amplatz Children’s Hospital is home to the largest pediatric mental health program in the Midwest and is the state’s only children’s hospital with a psychiatric inpatient facility for just children and teenagers. It serves nearly 90 percent of Minnesota teens who require inpatient care.

And thanks to an $11.2 million gift from lead hospital donor Caroline Amplatz, J.D., that allowed for the renovation, the space now matches the high caliber of care offered there.

Developed with kids in mind

The young people who come to Amplatz Children’s Hospital for behavioral care have a wide array of mental health issues, explains S. Charles Schulz, M.D., head of the Department of Psychiatry in the University of Minnesota Medical School. Some have severe anxiety caused by abuse. Some are adolescents who are clinically depressed and have tried harming themselves, or who are showing first signs of psychosis. Some are struggling with substance abuse. Others are children with autism who have outbursts so severe that they have trouble functioning at school and at home.

One of the critical concerns throughout the architectural planning of the unit, Schulz emphasizes, was maintaining children’s safety.

But there was also berth for new concepts in the 20-bed mental health unit and 12-bed intensive treatment center. The design, developed in concert with the architectural firm BWBR, eliminated harsh corners and incorporated soft angles, curved walls, and semicircle motifs. Large windows at the end of each hall and in every child’s room provide plentiful natural light.

“A lot of times kids find it helpful just to sit and look out the window,” Wendt says.

Children are empowered by interactive features, like switches that alter the colors of lit panels on the walls of the common room. They can turn on music or dim the lighting in their bedrooms.

The opportunity to play was built into the space as well. The unit has a dedicated sensory room equipped with weighted blankets, soft lights, and a water-filled column with bubbles to help agitated children calm down. Children can seek respite in the room, nestling into a hammock, or find pleasure in swinging across the room on a 10-foot zip line.

“Different things work for different children, and some need motion to calm themselves,” says occupational therapist Lynne Bradbury. “They come in and gravitate to whatever activity they need. It’s cozy, and they feel safe here.”

Better space, better attitudes

Several signs suggest the renovation already has affected care. The staff has noted that the children have been more responsive and more respectful while on the unit.

“The new space gives a whole different message to kids,” says Melissa Peterson, whose daughter has spent time on the unit during a mental health crisis. “The openness of the space, even the color and the light, have a playfulness, which is great to help kids feel safer. It speaks to their dignity and says this is a place for healing.”

In fact, the incidents requiring restraints and periods of seclusion—used when children get uncontrollably agitated—have dropped precipitously, Wendt notes.

The environment has made an impression on clinicians, too. “People are really happy to come to work,” Wendt says. “That’s critical in caring for kids, because kids are quick to sense tension if it’s there.”

The hope is that the attractive, aesthetic space will also help recruit talented staff, including pediatric psychiatrists, who are in demand throughout the country.

One of the greatest successes of the renovation has been the rehabbed pool in the lower floor of the hospital. Children who meet behavior evaluations can swim daily, and many are quick to grab the opportunity.

“A pool is not a typical feature for a child-adolescent psychiatric setting, but it’s a health necessity,” Wendt says. “Many of the medications cause weight gain. Kids may be on the unit for a few days to weeks, and the pool gives them the chance to exercise.”

A group laughing and splashing in the water, however, makes it clear that it’s also a place to feel at ease, let off steam, and just play like kids.

To learn how you can help, contact Courtney Billing at 612-626-1931 or cbilling@umn.edu.

Finding a brighter future for children’s mental health

A wide array of ongoing research keeps the University of Minnesota at the leading edge of pediatric mental health treatment. Here are a few examples of studies under way:

Psychiatrist Kathryn Cullen, M.D., is studying MRI scans of young people dealing with depression to understand the neurobiology of mental illness in developing brains.
Psychologist Meredith Gunlicks-Stoessel, Ph.D., is developing a novel protocol for using cognitive behavioral therapy to treat adolescent depression.
Psychiatrist Sanjiv Kumra, M.D., is studying how the physiological effects of recreational drugs such as marijuana increase the risk of mental illness in young people. His goal is to develop methods of reducing or treating substance abuse among adolescents.

You can make a difference

Help the University of Minnesota save lives, inspire hope, and prepare the world’s future health care leaders. Make a gift today.

Because with your support, anything is possible.

Because hope can go a long way

Learn more about how you can support children’s health at UofMHope.org

The gift of Grace

2013-04-11T16:30:37Z

Back from the brink of death, Eagan girl thrives after heart transplant

Grace O’Masta has come a long way from the devastating day in spring 2008 when her parents were told their month-old daughter likely wouldn’t survive the night.

Born with an enlarged and weakened heart that wasn’t capable of pumping enough blood on its own, the Eagan girl was living at University of Minnesota Amplatz Children’s Hospital, hooked up to the Berlin Heart—a then-experimental ventricular assist device—and on the waiting list for a transplant.

Amplatz Children’s Hospital was one of 13 sites nationwide to participate in Berlin Heart clinical trials. The device, which gained approval from the U.S. Food and Drug Administration in late 2011, takes over the work of an ailing heart until the patient can get a transplant, or until the heart becomes strong enough to function again on its own.

While on the Berlin Heart, Grace had a stroke. “She was very, very sick,” says Rebecca Ameduri, M.D., one of Grace’s cardiologists.

Grace had lost about a third of her brain mass and was scratched from the transplant list. Family gathered to say goodbye, holding a prayer service as Grace was disconnected from the Berlin Heart.

“I was holding her and crying,” recalls her mom, Jenny O’Masta. “And I’d look up at the doctors, and they were all still watching her and looking at the monitors. And she’d open her eyes and look at me, and kind of snuggle into me. I was confused.”

Home and back again

To everyone’s surprise, Grace’s heart rate and blood pressure remained steady.

“That turned into two days, then three days, and then four,” O’Masta recalls. Still, expectations were low. “When we went home in July 2008, the understanding was, maybe she’ll live to 2. Her heart’s just not that strong.”

Grace’s health declined in the winter of 2011. A few months later, she went into cardiac arrest during a dental exam. Her parents and doctors managed to get the toddler back on the heart transplant list; meanwhile, Grace was reconnected to the Berlin Heart.

While her parents took turns caring for new baby Olivia with help from family, Grace began living at the hospital again. She quickly became a favorite among Amplatz staff, who marveled at her “amazing” developmental progress, Ameduri says.

“Nurses, doctors, she wanted to play with whomever came in the room,” O’Masta says. “We’d put her on the mat by the door so she could wave at people going by. She kind of developed a more outgoing personality.”

O’Masta attributes some of Grace’s resilience and growth to the outstanding care she received at Amplatz.

Astounding recovery

In the fall of 2012, Grace got a new heart. Under the lead of Amplatz Children’s Hospital heart surgeon Roosevelt Bryant III, M.D., the transplant was a tremendous success. “The typical patient goes home in 14 days; Grace went home in 10,” Ameduri says.

A transplanted heart has a life expectancy of about 18 years. “By the time Grace needs another transplant, hopefully [the process] will be even smarter and better,” Ameduri says.

Today life at home is blessedly normal for Grace: being in preschool with a visiting teacher, enjoying the family’s new dog, romping on the swing set, and playing (and fighting) with her sister.

Now 4 years old, Grace visits Amplatz three times weekly for occupational, physical, and speech therapy. Her recovery has been a revelation to all.

“She doesn’t hurt anymore,” O’Masta says. “She’s a different kid.”

You can make a difference

Help the University of Minnesota save lives, inspire hope, and prepare the world’s future health care leaders. Make a gift today.

Because with your support, anything is possible.

Because hope can go a long way

Learn more about how you can support children’s health at UofMHope.org

Where the heart is

2013-04-11T16:29:45Z

Couple’s gifts support healthy children now and into the future

And through their many connections to the University over the years, they’ve only grown to appreciate it more.

“If there’s a problem out there that needs to be solved, there’s only one place where all of these incredibly bright, talented, courageous, dedicated people belong and where they serve,” says Nancy Lindahl. “I’ve always believed [the University was] a source for so many things that are right and good.”

It has become a logical place for the couple to direct much of their giving. But deeply personal family ties helped them decide what initiatives to support.

When they chose to adopt a room at University of Minnesota Amplatz Children’s Hospital in 2010, they did so in loving memory of their first son, Andrew John Lindahl, who died just days after he was born in the spring of 1973.

“We’ve always believed that this is a child who, with better medical care, would have lived,” John Lindahl says. Medicine just wasn’t advanced enough to save his life at the time, he adds.

The Lindahls describe their latest major gift to the University as a “cross-pollination” of their passions for pediatrics, research, and heart health. (Both of Nancy’s parents were University faculty members, and both died of heart attacks on campus.)

Established with a gift of $1 million, the John and Nancy Lindahl Children’s Heart Research Innovators Fund will provide startup funding for the most forward-thinking scientists to get novel research projects off the ground. The gift will be recognized in the new Cancer and Cardiovascular Research Building, which is slated to open this summer in the University’s burgeoning Biomedical Discovery District—located right behind TCF Bank Stadium.

The Lindahls say it’s especially meaningful that their gift will be acknowledged in a building that’s designed to promote scientific collaboration between disciplines.

And they see potential for their gift to help find better ways to treat and prevent heart disease in both children and adults. “So many adult problems can be solved by starting the research in children,” Nancy Lindahl says.

John Lindahl considers this a “base gift” that will help the projects it funds attract even more support from other sources such as the National Institutes of Health. “I would hope that one of the things that comes out of this is that the contribution can really be leveraged multiple times,” he says.

And because it’s the University of Minnesota, the Lindahls are confident it will happen.

“It’s where the answers come to the great questions,” Nancy Lindahl says.

You can make a difference

Help the University of Minnesota save lives, inspire hope, and prepare the world’s future health care leaders. Make a gift today.

Because with your support, anything is possible.

Because hope can go a long way

Learn more about how you can support children’s health at UofMHope.org

University Pediatrics Scholars Award gives a lift to up-and-coming researchers with fresh ideas

2013-04-11T16:28:27Z

One of the most important steps in pushing medical science ahead is funding talented, young researchers who bring new ideas and approaches to solving health problems.

That’s the thinking behind the University Pediatrics Scholars Award, which has been given annually since 1990 to at least one promising pediatrician-researcher who’s getting a fledgling lab up and running.

So far the award, now funded by proceeds from WineFest—A Toast to Children’s Health, has supported 25 up-and-coming University of Minnesota faculty members with more than $2 million cumulatively. (Nineteen of them are still at the University.) That start-up money has helped to attract nearly $100 million in new grant funding. Recipients of the award have made contributions to fields such as stem cell science, cystic fibrosis, and diabetes.

Shane McAllister, M.D., Ph.D., who received the University Pediatrics Scholars Award in 2012, is using his funding to make strides against Kaposi sarcoma herpes virus (KSHV). The virus turns up in Africa, predominantly in children, and often leads to deadly tumors on the inner lining of their blood vessels.

With the award, McAllister will tackle questions about KSHV from several angles. In his lab, he’ll test the drug propranolol, which has been used successfully to treat a benign type of tumor in children but hasn’t been tested against KS tumors. He’s also interested in how the virus leads to cancer in the first place.

“It’s an enduring mystery why only some children get infected,” he says, “or why a subset goes on to develop cancer.”

McAllister’s research could have applications to many other disease processes, as well.

“The interface between viral infection and the development of cancer has not been studied extensively, particularly since much research has turned to genes,” says Mark Schleiss, M.D., associate chair of research in the Department of Pediatrics, who leads the selection committee for the award. “It’s very innovative work.”

Learn more about the researchers WineFest proceeds have benefited at z.umn.edu/wfimpact.

You can make a difference

Help the University of Minnesota save lives, inspire hope, and prepare the world’s future health care leaders. Make a gift today.
Because with your support, anything is possible.

Because hope can go a long way

Learn more about how you can support children’s health at UofMHope.org

Raise your glass

2013-04-11T16:27:26Z

Join us May 10 and 11 for WineFest No. 18—A Toast to Children’s Health

University of Minnesota Amplatz Children’s Hospital is world-renowned for making history with medical firsts and breaking records tied to improving outcomes for children.

That’s why the two-day WineFest No. 18 is all about setting records. What better way to celebrate than to break another one?

We’ll attempt to break the Guinness World Record for “Most People Uncorking Wine Simultaneously” on Friday, May 10. Be prepared to uncork a bottle of wine in 30 seconds as we shatter the current record.

Learn more at www.thewinefest.org.

You can make a difference

Help the University of Minnesota save lives, inspire hope, and prepare the world’s future health care leaders. Make a gift today.
Because with your support, anything is possible.

Because hope can go a long way

Learn more about how you can support children’s health at UofMHope.org

Rock-a-bye, babies

2013-04-11T16:26:32Z

Karen Kaler, wife of University of Minnesota President Eric Kaler, Ph.D., and Rebecca Kill, wife of head Gopher football coach Jerry Kill, rock babies in the neonatal intensive care unit at University of Minnesota Amplatz Children’s Hospital every week. Learn more about volunteer opportunities at www.uofmhope.org.

You can make a difference

Help the University of Minnesota save lives, inspire hope, and prepare the world’s future health care leaders. Make a gift today.
Because with your support, anything is possible.

Because hope can go a long way

Learn more about how you can support children’s health at UofMHope.org

Accelerate healing by adopting a room at Amplatz

2013-04-11T16:24:47Z

Children who need blood and marrow transplants (BMTs) come to University of Minnesota Amplatz Children’s Hospital from across the country and beyond for leading-edge care. These kids often spend several weeks, even months, in the hospital due to the severity of their illnesses.

The expert and innovative care offered at Amplatz Children’s Hospital—home to the oldest and one of the most respected BMT programs in the world—is also reflected by the amenities offered in its Adopt A Rooms.

Adopt A Rooms are customizable, private rooms designed specially for kids and their families. Bedside consoles give children command of almost everything in their spacious rooms, providing the kids a sense of control during a time when they yearn for it.

“Adopt A Rooms have made a big difference in the lives of the kids we take care of,” says John Wagner, M.D., director of the Division of Pediatric Blood and Marrow Transplantation. They’ve even helped patients get better faster, he says.

So far seven of the 24 rooms in Amplatz’s BMT unit have been adopted—the latest by the staffing agency Aerotek. But all of these rooms need Adopt A Room upgrades, Wagner says, so that patients can get back to playing like kids.

Learn more about how you or your company can adopt one of the 17 remaining rooms on the BMT unit at uofmhope.org, or contact Elizabeth Patty at 612-625-6136 or patty@umn.edu. See the full list of our Adopt A Room sponsors.

You can make a difference

Help the University of Minnesota save lives, inspire hope, and prepare the world’s future health care leaders. Make a gift today.
Because with your support, anything is possible.

Because hope can go a long way

Learn more about how you can support children’s health at UofMHope.org

IRA charitable giving opportunity extended for 2013

2013-03-07T15:38:41Z

Thanks to recent legislation, you can again benefit from a popular tax-advantaged giving option.

Make a gift of up to $100,000 directly from your IRA to the University of Minnesota Foundation (UMF) to support medicine and health research before December 31, 2013, and you can avoid paying federal income tax on the amount of your gift.

These rules apply to IRA charitable rollovers in 2013:

Only IRAs are eligible (other types of retirement accounts are not).

You must be age 701/2 or older at the time you make your gift.

Your gift must come directly from the IRA custodian to UMF.

You can give up to $100,000 from your IRA to one or more qualified charities in 2013 (and if your spouse has a separate IRA, you can each give up to $100,000).

Your gift must be outright; it cannot be used to fund a charitable gift annuity or charitable remainder trust.

While you will not be able to claim a charitable deduction for your IRA rollover gift, you also won’t owe federal income tax on any amount up to $100,000 that you distribute to a qualified charity.

To learn more about supporting University of Minnesota research, education, and care through the IRA charitable rollover option or through another type of planned gift, contact our gift planning team via email or at 612-624-3333 or 800-775-2187.

You can make a difference

Help the University of Minnesota save lives, inspire hope, and prepare the world’s future health care leaders. Make a gift today.
Because with your support, anything is possible.

Because hope can go a long way

Learn more about how you can support children’s health at UofMHope.org

Finding inspiration through music

2013-02-13T19:21:51Z

Zach Sobiech Osteosarcoma Fund gives a lift to University bone cancer research

Zach Sobiech is practically a rock star. With just months to live, the 17-year-old teen from Stillwater, Minn., started writing songs to say goodbye to his family and friends. And he chooses to embrace every day with hope and joy.

He never expected that his songs would make him world-famous. The YouTube video for Zach’s song “Clouds” has more than 2 million views, and through a partnership with Minneapolis-St. Paul radio station KS95, Zach achieved one of his dreams of writing and recording a song in a studio with professional musicians.

On Saturday, February 16, Zach and his friends will perform at a sold-out benefit concert alongside chart-topper Vicci Martinez and other Minnesota music notables at the iconic Varsity Theater in Minneapolis. Ticket sales will benefit the Zach Sobiech Osteosarcoma Fund through Children’s Cancer Research Fund in support of leading-edge research at the University of Minnesota.

Zach has been battling osteosarcoma, a rare bone cancer, since he was diagnosed at age 14. As the disease spreads, doctors have no more effective treatment options to offer him a cure.

His family created the Zach Sobiech Osteosarcoma Fund to help advance several important research projects at the University—home to one of the top sarcoma research and treatment programs in the nation—aimed at giving children a better chance for a cure.

More than 1,100 people from 34 countries who have been inspired by Zach’s outlook on life together have donated more than $64,000 to his fund.

These gifts are helping University scientists develop new therapies to treat osteosarcoma. The University team—under the direction of Amplatz Children’s Hospital hematologist-oncologist Brenda Weigel, M.D., who holds the Lehman/Children's Cancer Research Fund Endowed Chair in Pediatric Cancer and codirects the Masonic Cancer Center's sarcoma program—is leading the charge to bring two promising new drugs to patients: an immune-based therapy and a drug that kills osteosarcoma cells. The fund also supports an effort to map the genetic factors that signal osteosarcoma growth.

Learn more about Zach’s story, or make your gift to the Zach Sobiech Osteosarcoma Fund today.

You can make a difference

Help the University of Minnesota save lives, inspire hope, and prepare the world’s future health care leaders. Make a gift today.
Because with your support, anything is possible.

Because hope can go a long way

Learn more about how you can support children’s health at UofMHope.org

Dr. Jakub Tolar named director of the University of Minnesota’s Stem Cell Institute

2012-11-28T16:02:06Z

Pediatric blood and marrow transplant physician Jakub Tolar, M.D., Ph.D., has been named director of the University of Minnesota’s Stem Cell Institute. He will assume the role on January 1, 2013, when the institute’s current director, Jonathan Slack, Ph.D., steps down to return to his native England.

Tolar is currently an associate professor in the University of Minnesota Medical School’s Department of Pediatrics, where he holds the Albert D. and Eva J. Corniea Chair. He is an expert in the field of pediatric blood and marrow transplantation and director of stem cell/gene therapies in the Masonic Cancer Center, University of Minnesota.

“Jakub is going to be a superb leader for the Stem Cell Institute. He has a breadth of knowledge and experience that spans the continuum of stem cell science, from fundamental developmental biology to design and conduct of clinical trials,” says Tucker LeBien, Ph.D., the Medical School’s vice dean for research. “The University has been a leader in unlocking the potential of stem cell research, and Jakub will have the opportunity to lead a cohort of talented faculty and students from across the University to harness the potential of stem cell science in research and patient care.”

In his new role, Tolar will oversee the world’s first interdisciplinary institutes dedicated to stem cell research. The Stem Cell Institute draws University faculty from 17 departments and centers participating in stem cell research. These faculty members have secured more than $43 million in funding since 1999 to support research targeting five primary diseases: cancer, diabetes, heart disease, neurologic disorders, and congenital conditions. Many of these accomplishments would not have been possible without the leadership of the institute’s outgoing director, Jonathan Slack.

“One of Jonathan’s initial contributions to the institute was to establish a facility for creating induced pluripotent stem cells that could be used by investigators throughout the institution … to advance stem cell treatments, technology, and clinical approaches,” says LeBien. “He also had his eye on the educational mission of the institute and led the development of a highly successful M.S. degree in stem cell biology.”

Since joining the University of Minnesota from his native Czech Republic in 2005, Tolar has been active in both research and clinical education. His research focuses primarily on cellular therapies, specifically on improving the safety of existing therapies and investigational mechanisms by which stem cell transplantation is effective in repairing damaged tissue.

Tolar maintains a clinical practice through the University of Minnesota Amplatz Children’s Hospital and is focused on protocols using hematopoietic stem cell transplant as a treatment for a number of genetic conditions. In 2011, he was named one of the Best Doctors in America.

Learn more about Dr. Tolar’s groundbreaking epidermolysis bullosa (EB) work and double your gift to support EB research.

Dr. Tolar’s fight against EB

Watch a video featuring a Sun Prairie, Wis. boy suffering from epidermolysis bullosa (EB) who is undergoing breakthrough treatment from Dr. Tolar at University of Minnesota Amplatz Children’s Hospital.

Learn more about Dr. Tolar’s fight against EB and how you can help.

You can make a difference

Help the University of Minnesota save lives, inspire hope, and prepare the world’s future health care leaders. Make a gift today.
Because with your support, anything is possible.

Because hope can go a long way

Learn more about how you can support children’s health at UofMHope.org

Minnesota Masons adopt a special room

2012-11-26T15:55:32Z

The Grand Lodge of Minnesota and Minnesota Masonic Charities have jointly sponsored an Adopt A Room at University of Minnesota Amplatz Children’s Hospital, continuing the Masons’ decades-long commitment to improving children’s health.

More like home

Adopt A Rooms, customized private rooms designed for kids and their families, help improve outcomes and accelerate healing at the new Amplatz Children’s Hospital.

Gifts to Adopt A Room will equip and enhance patient rooms today and sustain those rooms for decades to come.

To learn more, contact Elizabeth Patty at 612-625-6136 or e.patty@mmf.umn.edu.

Adopt A Room Videos

Inside an adopt a room

Masons Adopt A Room dedication

You can make a difference

Help the University of Minnesota save lives, inspire hope, and prepare the world’s future health care leaders. Make a gift today.
Because with your support, anything is possible.

Because hope can go a long way

Learn more about how you can support children’s health at UofMHope.org

Amplatz Children’s Hospital playground named in honor of Vikings player John Sullivan

2012-10-30T13:25:34Z

John A. Sullivan, center for the Minnesota Vikings, is donating $150,000 to make a new University of Minnesota Amplatz Children’s Hospital playground possible. To support the project, Vikings linebacker Chad Greenway has donated $25,000 through his Lead the Way Foundation, and the Minnesota Vikings have contributed the remaining $25,000 necessary for the $200,000 project. Sullivan announced his support at a dedication ceremony on October 30.

The newly named Sullivan Playground will be just outside University of Minnesota Amplatz Children’s Hospital and will serve patients and their siblings.

Working with Landscape Structures, a Minnesota company that designs playgrounds for children of all abilities, Amplatz Children’s Hospital child rehabilitation therapists and child-family life specialists selected a variety of activities and structures that are fun and appropriate for all children, regardless of age and medical condition.

The secure and private play space will incorporate therapeutic, sensory, and developmental elements as well as mix of climbing, discovery, sliding, and spinning activities.

It will also feature the first commercial outdoor slide ever made to accommodate children with IVs. The slide’s custom-designed posts and attachments will allow patients to climb Americans with Disabilities Act-approved stairs and go down the roller slide without disconnecting their medical devices.

The Sullivan Playground is scheduled to open next spring.

Minnesota Vikings Beyond The Gridiron video

Watch a video from the Minnesota Vikings Beyond the Gridiron series featuring Viking John Sullivan, and his generous donation to build a playground at University of Minnesota Amplatz Children’s Hospital.

Slideshow

See a slideshow of the Sullivan Playground dedication ceremony.

The Sullivan Playground

You can make a difference

Help the University of Minnesota save lives, inspire hope, and prepare the world’s future health care leaders. Make a gift today.
Because with your support, anything is possible.

Because hope can go a long way

Learn more about how you can support children’s health at UofMHope.org

70 pounds lighter and a new person

2012-10-23T18:41:40Z

At 16 and more than 300 pounds, Steven was in a desperate situation. His weight was taking a toll on him physically and emotionally. He suffered from sleep apnea, “excruciating” headaches, showed signs of type 2 diabetes and was depressed.

Just a few minutes of light activity left him out of breath. He became housebound, spending much of his day in his room and in bed, taking classes through a home program.

Hope in short supply

So eight months ago, Steven and his mother, Terri, made the three-hour trip from their home in northern Minnesota to the Weight Management Program at University of Minnesota Amplatz Children’s Hospital as a last-ditch effort. They assumed his only option was to undergo weight loss surgery, something neither of them wanted.

“We felt pretty hopeless about Steven’s situation,” says Terri. “We felt surgery was our only chance to turn Steven’s life around.”

“Steven’s situation, while it may sound extreme, is probably happening in many homes across the country, given the dramatic increase in numbers of youth with extreme forms of obesity,” says Claudia Fox, M.D., director of the Weight Management Program at our children’s hospital. “Fortunately, for Steven, he had the courage to come forward and seek treatment.”

Transforming eating habits

Today, with help from his interdisciplinary team at the clinic, Steven is 70 pounds lighter and a new person, all without surgery.

Terri and Steven describe his transformation into a normal, happy teenager as nothing short of amazing.

“Yesterday, I walked a mile from where we parked to Target Stadium and a Twins game,” he says. “I wasn’t winded at all. And then I walked all around inside the stadium and a mile back to the car!”

Claudia “not only took the time to listen, but she actually heard Steven,” says Terri. “She took the time to get to know him. That helped Steven talk openly. Best of all, she let us know there were options other than surgery.”

His care team developed an individualized care plan that includes:

a 2,000-calories-per-day meal plan consisting of three meals and two snacks

instruction to eat all his meals and snacks at the table to associate eating with being at the table rather than being in his room

no-calorie drinks

a prescription medication to help control overeating

a referral to a physical therapist who would help Steven improve his physical functioning.

Skeptical when he left the clinic that first day—he heard “eat less” before—the first week at home was tough but “I wanted to give it my best shot,” he says.

It became a little easier as the medication started to work. At the end of the first week, they called Mary Deering, weight management nurse coordinator, with great news: Steven had lost 10 pounds.

“I’d never been able to lose any weight before,” he says. “We were ecstatic,” says Terri.

His weight loss continued but so did the headaches, which hindered Steven’s improvement by keeping him sedentary.

Persistent stumbling block

“We were missing something,” says Claudia. He was scheduled to meet with a neurologist but, on his way there, he had such a severe headache that Claudia directed them to our children’s hospital Emergency Department (ED). In the ED, Jeffrey Louie, M.D., questioned whether the headaches might be caused by chronic carbon dioxide retention related to his sleep apnea.

Steven’s pulmonologist conducted a blood gas test in the early morning, when carbon dioxide in the blood can be the highest, and his team determined that, when he slept on his side and stomach, his sleep apnea mask was pushed off center and put pressure on his chest. This exacerbated his sleep apnea.

His pulmonologist ordered a new type of mask, and his weight management care team ordered a hospital bed for him.

“We wanted to see if elevating his head would help him avoid pressure on his chest,” says Claudia. While it took a while for Steven adjust to the bed, the headaches started to slowly abate. Today, he’s nearly headache-free.

Terri believes that the comprehensive care Steven is receiving is what differentiates our program. “Until we met with Dr. Fox, no one ever took the time to really listen and put all the pieces together for us,” she says. “She looks at the whole picture.”

A new way of life

As his weight loss continued, Steven’s family worked with his care team to learn new ways of eating.

Terri admits it’s been a struggle. “I needed to try new ways of cooking,” she says. “Portion sizes are important. Now, I dish Steven’s plate up at the stove. And I’ve stopped using food as a reward. I didn’t even realize I was doing that.”

The new eating habits have had other positive side effect. Terri’s lost 12 pounds, and their grocery bill has decreased.

While he’s striving to lose more weight, Steven is already doing things he and his mother never thought possible, like playing catch outside and riding his bike.

“Just to hear him laugh again is a treat,” says Terri.

Continuing to work with his care team, Steven offers hope to others in similar situations.

“You can certainly do it but it will be a challenge,” he says. “Changing who you are is a lot of work, but it’s definitely worth it.”

With rising levels of childhood obesity, our program demonstrates our commitment to improving the health of mothers and children.

Story courtesy of the Fairview Intranet.

You can make a difference

Help the University of Minnesota save lives, inspire hope, and prepare the world’s future health care leaders. Make a gift today.
Because with your support, anything is possible.

Because hope can go a long way

Learn more about how you can support children’s health at UofMHope.org

Unraveling a mystery

2012-09-21T19:10:30Z

University researchers look for answers on anatomy, early diagnosis, and prevalence of autism spectrum disorders

Margaret Semrud-Clikeman, Ph.D., sees the pain and frustration often when she works with children who have autism spectrum disorders (ASDs) or other nonverbal learning disabilities. The preteens and teens participating in her studies often blame themselves for their outbursts, peer clashes, and trouble making friends—their difficulty in controlling their emotions in general.

Over the summer, those kids got a whole new perspective on their behavior from functional MRI brain scans taken by Semrud-Clikeman, who directs the Division of Behavioral Neuroscience in the University of Minnesota Medical School’s Department of Pediatrics.

With that powerful glimpse inside their heads, the kids saw that their brains may be larger in key spots and “fire” differently in certain situations. And it clicked for them—anatomical and physiological differences may contribute to the social challenges and repetitive behaviors common to children with Asperger’s syndrome, an ASD also characterized by normal linguistic and cognitive development.

“You’ve shown me that my brain is wired differently and this is not all my fault—I’m not just weird,” Semrud-Clikeman recalls hearing from one boy.

It was a revelation, one of many coming out of a variety of University studies examining the roots, associations, symptoms, and prevalence of autism spectrum disorders.

Thanks in part to a $1 million gift from Alfred and Ingrid Lenz Harrison, researchers hope to answer an array of questions, including:

Whether biomarkers can help identify children who respond particularly well to certain types of therapy;

What we can learn from the development of an ASD mouse model with duplication of chromosome 1qZ1, a genetic error possibly tied to schizophrenia or autism; and

Whether children with ASDs have an impaired ability to recognize faces.

For her part, Semrud-Clikeman hopes her research will help children with ASDs better understand and manage their emotional tone.

“Perhaps getting the right help at the right time may alter brain activity and brain development in a positive manner,” she says. “Is there a window of opportunity where these interventions have the most effect?”

Identifying ASDs earlier

While Semrud-Clikeman is studying adolescent brain activity, other researchers at the University’s Center for Neurobehavioral Development are going even younger, peeking at infants’ brain activity in hopes of identifying ASDs earlier.

Today ASDs can be reasonably diagnosed by a child’s third or fourth birthday, but researchers want to see if they can be predicted even earlier, well before language and behavioral symptoms typically arise. Early diagnosis and intervention can help kids with ASDs navigate how to learn, play, and interact with others as they grow.

In collaboration with Boston Children’s Hospital, University researchers are tracking the brain responses of 6- to 24-month-olds who are at higher risk of ASDs (because they have an older sibling with an ASD, which increases their chance of being diagnosed with an ASD to 20 percent). They attach sensors to a baby’s head and monitor the fluctuations associated with various stimuli, such as seeing a picture of his or her mother versus a stranger.

“We measure the electrical activity that occurs in the brain,” says Neely C. Miller, a researcher at the Center for Neurobehavioral Development. “The goal of this study is to find signs that suggest risk of ASDs even before the first birthday, identify any kind of markers that would emerge, and push back the diagnosis as early as possible.”

Children in the study are also assessed using the Autism Observation Scale for Infants (AOSI), which measures specific risk markers for autism in children as young as 6 months.

While Miller expects to wrap up the study by next summer, it’s already providing valuable insight for the 24 participating families.

“We’ve had a few kids score in the range of concern on the AOSI who have been referred to early intervention services,” Miller says. “But we’ve also had some parents’ minds put at ease. They’ve been concerned and feel like their child’s development is being monitored by someone who understands their concerns.”

Digging through data

Another University group is taking a closer look at the demographic data of children who already have been diagnosed with ASDs to determine whether there is a higher prevalence of autism in Somali versus non-Somali children who live in greater Minneapolis. The effort expands upon a 2009 Minnesota Department of Health study that looked at autism rates among Minneapolis public preschool students and found a higher prevalence among Somali children.

While these ASD studies are ongoing, researchers are encouraged that their work will advance the understanding of ASDs and lead to more timely interventions, earlier diagnosis, and better quality of life for children.

Just as powerful, they say, is the personal impact on families.

“There’s so much to know, and it’s such a heterogeneous disorder with so many different outcomes and roots,” Miller says. “These parents are under so much stress. So it’s rewarding to give them an outlet to talk about their concerns and know that their child will get the services they need.”

You can make a difference

Help the University of Minnesota save lives, inspire hope, and prepare the world’s future health care leaders. Make a gift today.
Because with your support, anything is possible.

Because hope can go a long way

Learn more about how you can support children’s health at UofMHope.org

Children’s Health | Minnesota Medical Foundation

Moving toward a lifesaving EB cure

Preteen songstress doesn't let CF slow her down

'She is a star'

The gift of Grace

MN Twins tickets to benefit U of M NF research

Children's Health

Spring 2013

Renovated behavioral health unit fosters recovery

Back from the brink of death, Eagan girl thrives after heart transplant

Couple’s gifts support healthy children now and into the future

About Children’s Health

Archives

Designed to heal

Renovated behavioral health unit fosters recovery

Developed with kids in mind

Better space, better attitudes

Finding a brighter future for children’s mental health

The gift of Grace

Back from the brink of death, Eagan girl thrives after heart transplant

Home and back again

Astounding recovery

Where the heart is

Couple’s gifts support healthy children now and into the future

University Pediatrics Scholars Award gives a lift to up-and-coming researchers with fresh ideas

Raise your glass

Join us May 10 and 11 for WineFest No. 18—A Toast to Children’s Health

Rock-a-bye, babies

Accelerate healing by adopting a room at Amplatz

IRA charitable giving opportunity extended for 2013

Finding inspiration through music

Zach Sobiech Osteosarcoma Fund gives a lift to University bone cancer research

Dr. Jakub Tolar named director of the University of Minnesota’s Stem Cell Institute

Dr. Tolar’s fight against EB

Minnesota Masons adopt a special room

More like home

Adopt A Room Videos

Amplatz Children’s Hospital playground named in honor of Vikings player John Sullivan

Minnesota Vikings Beyond The Gridiron video

Slideshow

The Sullivan Playground

70 pounds lighter and a new person

Hope in short supply

Transforming eating habits

Persistent stumbling block

A new way of life

Unraveling a mystery

University researchers look for answers on anatomy, early diagnosis, and prevalence of autism spectrum disorders

Identifying ASDs earlier

Digging through data