We’ve moved!

Thank you for being dedicated readers of the Golisano Children’s Hospital blog! We’ve moved to a new location and we hope you’ll follow us there. It’s http://www.urmc.rochester.edu/childrens-hospital/giving/miracle-milestones.aspx.

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If you usually receive the blog by email, you should continue to do so, but the email will now come from “Golisano Children’s Hospital,” specifically sandy@urmc.rochester.edu. Please add that address to your contacts so the emails don’t get caught in your spam filter.

If you use RSS to read the blog, the new site is enabled for that service, so please add it to your favorite aggregator.

Thank you! And as always, you can keep up with hospital news on FB, Twitter and, more recently, on Instagram!

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New Mouse Model May Open New Autism Treatment Research Avenues

autismbrainWhen a scientist comes up with a great idea for new research, the biggest obstacle is often funding. Landing those big federal grants takes seed money and proof that the idea is worth pursuing, but seed money isn’t readily available.

Luckily for Nina Schor, M.D., Ph.D., the William H. Eilinger Chair of Pediatrics at the University of Rochester, she had an endowment she could take advantage of to follow a hunch about a brain receptor and its potential role in autism. Because of that forward-thinking donor, that research has resulted in a new mouse model that may give researchers a new avenue for testing drugs for autism. Nature Publishing Groups’ Translational Psychiatry published the study online last week.

Schor had been studying p75 neurotrophin receptors in her long-standing neuroblastoma research, but she also knew that p75NTR is involved in several body processes that have been implicated in the development of autism.

When Schor and her colleagues prevented mouse brains from making p75NTR in one autism-associated type of cell in the cerebellum, what they found was that not only does the mouse’s cerebellum resemble that of children with autism, but the mouse also behaves much like children with autism. They don’t engage in typical social behaviors of mice and instead, ignore stranger mice and lack curiosity about their surroundings. They also jump twice as much as typical mice, which is like a “stimming,” or self-stimulatory, behavior typical in children with autism.

Schor“Whether or not p75NTR turns out to be abnormal in children with autism,” Schor explained, “these studies still hold the promise of helping us explain the mechanisms behind the component behaviors of children with autism.

Schor plans to continue the research, focusing on more behavioral testing, finding evidence of whether children with autism have a p75NTR deficit in their cerebellum and starting pharmaceutical testing to see whether there is a drug that can replace the role p75NTR plays in that part of the brain.

“It’s a long way from a mouse model to a successful treatment in humans, but this is a good clue,” Schor said.

And without the funding from the William H. Eilinger endowment, Schor may not have been able to follow her hunch down this very promising path.

Schor’s co-authors on the paper describing the study are Louis T. Lotta, Jr., Katherine Conrad, and Deborah Cory-Slechta, Ph.D., professor of Environmental Medicine. The study was funded by the William H. Eilinger Endowment of Golisano Children’s Hospital at the University of Rochester Medical Center and by a pilot grant from the Strong Children’s Research Center.

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“Get Down On It” with the 27th annual Gala

Gala Save the DateThe Rochester Riverside Convention Center will be transformed into a tropical getaway for the 27th annual Golisano Children’s Hospital Gala on Oct. 18. Hundreds of advocates for sick and injured children will gather for the jungle-themed black-tie fundraising affair, dedicated to advancing the future of pediatric care. Last year’s event raised $625,000 for the region’s only children’s hospital.

The Gala is the children’s hospital’s premier fundraising event. The evening, featuring live performances from international recording artists Kool & the Gang, will kick off the “celebration” and silent auction at 6 p.m., followed by dinner and a shortened live auction at 8 p.m.

Learn about this year’s honorary chairs, our presenting sponsor, and more, on the new Gala web site, where, for the first time, you can purchase tickets and sponsorships directly.

Thank you for supporting the children’s hospital as we enter our final phase of construction on the new building!

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Family Learns Lupus Can Be Managed

The diagnosis was devastating, and Bobbie and Steve Clark were taking turns.

One would stay in the hospital room, showing a strong face for their daughter Tessa, while the other took to the hallway to safely shed their tears.

tessaclark“I was praying it wasn’t going to be lupus,” said Bobbie Clark, Tessa’s mother. “We know it could have been worse, but a 12-year-old — you don’t want to think she’s got a lifetime disease that can get worse or become fatal at any time.”

But the scary, uncontrollable systemic lupus erythematosus that they read about on the internet isn’t always the disease experienced by patients. After speaking with David Siegel, M.D., M.P.H., chief of the Division of Pediatric Rheumatology at UR Medicine’s Golisano Children’s Hospital, they learned that there was a chance that Tessa could go back to living a normal life — if her condition responded to treatment.

The Clarks hoped that Tessa would respond.

Read more…

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Construction Corner: A look inside

Take a look inside the future Golisano Children’s Hospital with these interior photos (and a few good external shots)! Featured in our upcoming Strong Kids newsletter, these pictures take you down the corridor of the third floor, otherwise known as the Neonatal Intensive Care Unit (NICU), and up to the seventh floor to the general patient rooms and our expansive Playdeck.

The exterior renderings have really come to life over the last six months and now the interior of the hospital is starting to do the same. Features of the main lobby are becoming easier to pick out, drywall is being laid, bathroom tile is being placed, and foot and head walls are going in.

Explore the building and learn more about naming opportunities and how you can make a difference for the future of sick and injured children, and their families, at the Finger Lakes region’s only children’s hospital.

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Cleft and Craniofacial Camp to Celebrate Awareness Month

Craniofacial CampJuly is National Cleft and Craniofacial Awareness and Prevention Month. A number of patients and families who are part of Golisano Children’s Hospital’s Cleft and Craniofacial Anomalies Center will create awareness together at the center’s annual Craniofacial Camp on Friday, July 18.

Held at Yogi Bear’s Jellystone Park of Western New York, the camp allows members of the craniofacial team and families to reunite for a picnic and celebration. In addition to enjoying activities like mini golf and horseshoes, attendees can also take part in water activities, including canoeing, playing on Yogi Bear’s Water Zone, and more.

Take a look at pictures from the 2013 Craniofacial Camp on our Facebook page and stay tuned for some from this year’s event!

IMG_3031The Cleft and Craniofacial Anomalies Center at Golisano Children’s Hospital is committed to improving community awareness of cleft and craniofacial conditions and is the region’s only center dedicated to meeting the needs of children born with cleft lip, cleft palate, and other craniofacial anomalies.

Approximately one of every 600 newborn babies are born with a cleft lip and/or cleft palate, making it one of the most common birth defects. Surgery is one of our current priority programs and your gift could help a child born with these common defects. Learn more about how you can make a difference in creating awareness and improving prevention of cleft and craniofacial conditions on the Cleft Palate Foundation website.

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Eddie Meath All-Stars Bond with Patients Before Big Game

Eddie Meath Top Section V football players and cheerleaders took the time to bond with patients at UR Medicine’s Golisano Children’s Hospital over some Abbott’s Frozen Custard on Wednesday, July 2, all before their big east vs. west Eddie Meath All-Star Game. In its 32nd year, the Eddie Meath game continues to benefit patients at the children’s hospital and has raised more than $150,000.

The ice cream social event gives players and participants the chance to bond with the patients they’re playing for. “You can really see the patients light up when they see the All-Stars,” said Betsy Findlay, director of special events for Golisano Children’s Hospital. “Every player makes it a point to make a connection with a patient and you can see in the smiles how much it truly means to both parties.”

See more pictures from the players visit to the playdeck on our Facebook page and check out the news coverage from our friends at YNN, Channel 13, and Channel 10!

The 32nd annual Eddie Meath All-Star Game will kick off at 7 p.m. Sunday, July 6, at Eastridge High School.

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Wilson Foundation Gives $500,000 to General Pediatrics

Joseph Wilson, co-chair of the Wilson Foundation

Joseph Wilson, co-chair of the Wilson Foundation

Inspired by the generosity and legacy of its founders, Joseph C. Wilson ’31 and Peggy Wilson, the Wilson Foundation has awarded $500,000 to establish The Wilson Community Pediatrics Fund in the Division of General Pediatrics at UR Medicine’s Golisano Children’s Hospital. This special gift to The Meliora Challenge: The Campaign for the University of Rochester will allow the division unparalleled opportunity to advance and accelerate projects on behalf of our region’s most needy children and families.

“Our work is all preventative. Some improves care in the short term, but a lot will improve quality and save costs long-term,” said Peter Szilagyi, M.D., M.P.H., chief of the Division of General Pediatrics. “This gift will allow us to add resources to existing programs and to enter new programs, and we will leverage it to try and bring in a lot more.”

Read more…

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Sun Shines on Construction Site for Summer

outside of buildingThe brick is laid. The windows are in. The crane will be taken down soon. From the outside, UR Medicine’s new Golisano Children’s Hospital looks almost done. In reality, a lot more work is ongoing inside, and we need the support of our generous community to help us get it done over the next 12 months.

As we transition into summer, we love seeing the sun shine on the building with the bright blue sky in its background, showing off its beauty and what it means to so many people.

The windows wrapping around the building reflect the sunlight and  stand out to visitors and those driving by. These captivating windows are just one of the exciting features of the future two-story playdeck on the 7th and 8th floors that will provide patients and families with a great view, which, on clear days, will reach the hills of the Finger Lakes. Progress on the space will even be visible through the windows for those stopping to imagine what it will all soon become.

sun shades NICUThe building team has also made a lot of progress on the future NICU. The floor is framed and drywalled and the installation of the outside sunshades has begun (as seen in the picture on the left).

All of these changes are very exciting and there are so many more to come! Keep up to date by liking the children’s hospital’s Facebook page and following us on Twitter and Instagram.

To find out how you can help support the new hospital, please call Scott Rasmussen at (585) 273-5932.

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Golisano Children’s Hospital Orthopaedics among Nation’s Best

SandersThe orthopaedic specialists at UR Medicine’s Golisano Children’s Hospital have earned a place on U.S. News & World Report’s Best Children’s Hospitals listing for the sixth year in a row.

In the recently-released 2014-2015 rankings, the service ranked 44th among 183 eligible pediatric centers.

“With their devotion to exemplary patient care and a commitment to providing the most comprehensive coverage possible, the pediatric orthopaedics team personifies our mission at UR Medicine,” said Bradford C. Berk, M.D., Ph.D., CEO of UR Medicine.  “My congratulations to the faculty and staff of Golisano Children’s Hospital and the Department of Orthopaedics for, yet again, being recognized as one of the best.”

Pediatric Orthopaedics is the only service at UR Medicine — adult or pediatric — to earn a Top 50 ranking for six consecutive years.

Read more…

LaurenGumtow2Golisano Children’s Hospital patient Lauren Gumtow is one of the many kids who benefit from the hospital’s innovative orthopaedic program. She is one of the first scoliosis patients in the United States to be outfitted with a special new growing rod.

The new device, installed at UR Medicine’s Golisano Children’s Hospital in April, can be lengthened magnetically as a child grows, and will drastically reduce the number of surgeries Lauren needs while she makes her way toward recovery.

Read more of Lauren’s journey…

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