Dr. Stephen Cook, assistant professor of Pediatrics at Golisano Children’s Hospital at the University of Rochester Medical Center, was among the 150 health-health advocates invited to attend the White House conference. There, members of the country’s leading heart and stroke groups will meet with White House Administration officials. They’ll have the opportunity to hear about legislation, regulations and initiatives the Administration has supported and is implementing to help improve cardiovascular health. Attendees will also have a chance to share their own experiences and ask questions.

To learn more about recent projects Dr. Cook has been involved in to help reduce the incidence of obesity in our local community and across the nation:

• Watch Dr. Cook as a guest panelist on WXXI’s “Second Opinion,” in which he speaks about sugar and its health implications.
• Read about the Greater Rochester Obesity Collaborative, which has been selected as a national model for obesity prevention and treatment.
• Note that Dr. Cook was named Science Advocate of the Year by the American Heart Association in 2011.
• Learn about two studies Dr. Cook was involved in, which point out some alarming trends in childhood obesity. Watch the corresponding videos, in which Dr. Cook explains why it’s important to know that many parents don’t realize their children are obese and how obesity has become more prevalent over the past 30 years.
• Read more on Dr. Cook’s finding that the city child obesity rate in Monroe County is nearly double the suburban rate.

Stay tuned with updates on the White House event, as the day unfolds, by:

• Viewing the Flickr page - www.flickr.com/AmHeartAdvocacy
• Joining in on Facebook –  www.facebook.com/YouretheCure
• Following on Twitter –  www.twitter.com/AmHeartAdvocacy
• Watching on YouTube - www.youtube.com/AmHeartAdvocacy

What do you think are the biggest challenges to curbing the incidence of heart disease and stroke in America?

Dr. Laura Silverman, guest blogger for this post

A recent article in the New York Times announced that rules for diagnosing autism spectrum disorders (ASDs) will soon change. It noted research suggesting that as a result of the change, many people would lose their autism diagnoses. Since the announcement there has been considerable debate, locally and nationally, over whether the changes will be helpful or harmful to people with an ASD. There is fear that many will lose their diagnoses, and with them an important part of their identities and access to services. To counteract the widespread rumors and speculation on the topic, below are some facts about why people are suddenly rethinking autism and what the changes will likely involve.

What are autism spectrum disorders now?

 Autism spectrum disorders are a group of five conditions that involve difficulties with communication and social skills, plus patterns of repetitive behaviors, such as hand flapping or over focusing on intense hobbies. The three most common diagnoses are autism, Asperger’s disorder, and pervasive developmental disorder-not otherwise specific (PDD-NOS).

How is an autism spectrum disorder diagnosed?

The current rules for diagnosing autism spectrum disorders are defined in a book published by the American Psychiatric Association, called the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition-Text Revision (DSM-IV-TR). The manual includes definitions of all of the conditions that are recognized as mental disorders, such as depression, anxiety, and schizophrenia. It functions as a rule book for grouping people together, who have similar patterns of behavior that interfere with their ability to function in daily life. What makes “mental disorders” like autism different from more traditional “medical conditions” is that they do not have clear biological features that can be measured. For example, if a person suspects strep, the doctor can order a throat swab to check for the presence of streptococcal bacteria. But mental disorders work differently – they are brain-based and in most cases we do not yet know the exact root causes or biological features that signal the disorder. Instead, conditions like autism are diagnosed based on patterns of behaviors that doctors observe. One of the big challenges in diagnosing autism and other mental disorders is that a person may have many of the features of an autism spectrum disorder, but without the right number or combination, they do not get a diagnosis. So in defining mental disorders, doctors must draw a line in the sand and decide where the cut-off falls. The line for diagnosing autism is changing, which means that a person’s diagnosis may change, even when his symptoms have not.

How were these changes decided upon?

The changes in the definition of autism were determined based on research that has been going on since the last version of the DSM came out. A panel of international experts reviewed the research and found that doctors are good at figuring out whether someone is on the autism spectrum. However, one doctor might give a person a diagnosis of Asperger’s, while another doctor would say it is PDD-NOS. To help resolve this, the new rules will combine the three autism spectrum diagnoses into one, since they are thought to reflect a common set of features and common underlying causes.

What will autism look like in the future?

The DSM-5 will come out in 2013, and the definition of autism spectrum disorders will change, as it has in past editions. Rather than continuing to broaden the spectrum (which has happened in the past), it will become narrower, in some ways. First, autism, Asperger’s disorder, and PDD-NOS are currently separate diagnoses. In the future they will be combined and referred to by a single name – autism spectrum disorder. Second, autism is currently diagnosed in people who have at least six symptoms across three different areas, including difficulties with communication, problems with social skills, and repetitive behaviors. In the future, the new definition will require three specific difficulties with communication/ social skills and at least two repetitive behaviors. Third, to get a current autism diagnosis a person must show developmental delays before the age of 3. The future diagnosis does not have this requirement, which will broaden the definition to include some people with Asperger’s or PDD-NOS diagnoses. Finally, there is no current system for documenting how greatly a person’s symptoms impact everyday life.  The new diagnosis will include severity scores designed to reflect the level of support and intervention that the person requires.

What will happen to people who lose their autism spectrum diagnosis?

 Although there has been speculation that people might lose their current diagnoses, we do not yet know whether things will play out this way. Many people with Asperger’s disorder and PDD-NOS will undoubtedly be given the new autism spectrum disorder diagnosis. People who do not have repetitive behaviors but still struggle socially may get a new diagnosis called social communication disorder. This new diagnosis is designed to acknowledge that there are people who have perfect vocabularies, but still struggle with the social aspects of language, such as understanding sarcasm or successfully holding a conversation. Since this is a new diagnosis, it is not yet known what types of services will be available.

Where can I get more information about the upcoming changes?

If you would like additional information on the proposed changes in the upcoming DSM-5:

New rules for diagnosing an autism spectrum disorder:  www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=94

Information about social communication disorder:

http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=489

Support and programs designed for children: www.unyfeat.org

Laura Silverman, Ph.D., assistant professor of Pediatrics at the University of Rochester Medical Center is a clinical psychologist in Golisano Children’s Hospital’s Kirch Developmental Services Center and director of the Communication and Social Cognition Lab.

Families of children with autism spectrum disorders often face a host of challenges, from finding the right intervention strategies to dealing with shifting diagnoses, as children learn and grow. Autism experts from Golisano Children’s Hospital at the University of Rochester Medical Center are committed to supporting families of children with autism.

When news of a new definition for autism came out on Jan. 20, Golisano Children’s Hospital’s Dr. Laura Silverman spoke with 13WHAM-TV‘s Evan Dawson to explain why the change was being made and offer some assurance to families.

The new criteria aim to make the process of diagnosing children with autism spectrum disorders more clear for providers, but just as importantly, the criteria aim to make the diagnosis less confusing for parents. Under the current diagnostic criteria, the name for what children have can change over time and then change back. For example, a child may initially be diagnosed with PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified), which is on the autism spectrum, but then after treatment or further development, he may receive a diagnosis of autism. The new criteria would eliminate that back and forth.

“Autism is vastly different in each individual case,” Dr. Silverman said. “It makes sense to look at who is getting what kind of service and why. The goal is to make it more transparent what kind of services people need and to make sure that the kids who get those services all have some similarities.” See the full interview from 13WHAM-TV here.

Golisano Children’s Hospital’s Dr. Tristram Smith, a national expert in the field of autism, spoke with MSNBC to offer some insight into a new study’s findings on autism. The findings stated that children with autism also tend to have other diagnoses as well. Dr. Smith recommended that families learn to understand that diagnoses can change, or that there can be more than one.

“Parents are often looking for that one answer,” Dr. Smith said. “Reality is, it’s a moving target, and it’s complicated. It can be more than one diagnosis at one time, or it can be different diagnoses at different times too.”  Read the full story with MSNBC here. 

We also welcome you to read about a grant Dr. Smith received to provide parent-based interventions for children with autism. Please call Rachael Davis at (585) 273-3023, to learn about opportunities to participate in studies like this one.

In a podcast called “There’s No Nanny 911″, Golisano Children’s Hospital’s Dr. Deborah Napolitano offered advice to help parents of children with autism to deal with challenging behaviors in the home environment. Dr. Napolitano focuses on helping children with autism using applied behavioral analysis (ABA) – the science of figuring out how to target and systematically change a specific behavior. Listen to the podcast here. We also invite you to read about an interesting study Dr. Napolitano conducted, in which she encouraged children with autism think more creatively, using lego blocks.

Golisano Children’s Hospital has made it a priority to enhance the programs and services we provide for families and children with autism. If you’d like to help, visit the Autism section of the Planning for our Future website or click here to make a gift today. For more on our services, visit the hospital’s Division of Neurodevelopmental and Behavioral Pediatrics page.

What services do you think are most helpful for families of children with autism?

Mark Siewert

We’re very excited to share that two of Golisano Children’s Hospital’s board members and their wives have pledged to make million-dollar gifts in support of our $100 million capital campaign.  Mark Siewert, chair of Golisano Children’s Hospital’s board, and his wife Marcia have pledged to donate $1 million to the hospital. J. Michael Smith, co-chair of the campaign and owner of The Cabot Group, and his wife Alice have committed to a $1.3 million gift.

J. Michael Smith

For more on these monumental gifts:

• Read this Democrat and Chronicle article.
• Check out this article, which appeared in the Rochester Business Journal.
• Visit WHEC-TV’s website to see their coverage.
• See the blurb from @Rochester, with links to press releases on the gifts.
• Visit the Featured Supporters section of our website, with stories about why Mark Siewert and J. Michael Smith wanted to invest in our children’s future.

To learn more about our capital campaign and how we’re hoping to expand so that we can provide the best possible care to the children in our community, visit the Planning for Our Future section of our website.

Zach Spaulding and his mom

We live in an incredible community, in which families going through tough times are never alone and people come together to help support the care of children they’ve never met. Helping those in need comes as second nature for Golisano Children’s Hospital and the wonderfully compassionate families in the Finger Lakes region.

We invite you to read the heartfelt story of two families from Corning, whose paths happened to cross at just the right time, as just one great example of the beautiful relationships that can emerge, unexpectedly, during trying times. Here’s the Democrat and Chronicle story, by Mare Hare, about 5-year-old Zach Spaulding and 3-year-old Loretta Getola — two little ones with brain tumors, who have come to be like siblings over the course of their many trips to Golisano Children’s Hospital.

Support for our community’s families is alive and well outside these walls, but it is also very much a part of the culture within Golisano Children’s Hospital. We invite you to explore our pages to read more about our Child Life Program, our Pediatric Social Work Division, our Music Therapy Program, our focus on family-centered care and our Supportive Care Team.

If you’d like to learn about ways to get involved with helping Golisano Children’s Hospital, please visit our giving site, which has ideas about how to build a fundraiser, as well as sponsorship opportunities, upcoming fundraising events and how you can help us with our plans to build a better future for the children in our community.

As we set our course for 2012, we thought we’d stop and reflect on all the amazing news that came out of last year. Here are our top five stories of 2011:

• See News 10 NBC’s coverage of the news of Tom Golisano’s $20 million pledge to Golisano Children’s Hospital.
• Watch YNN’s coverage of Golisano Children’s Hospital’s announcement of a  $100 million capital campaign, at the annual Gala.
• Jennifer Johnson shared her harrowing and heartwarming experience in the NICU with 13WHAM.
• We celebrated our five amazing 2011 Miracle Kids, including the remarkable Ryan Sheehan, who was born with extraordinarily rare heart complications. Ryan is now in college and doing great. Read his story here.
• ABC News worked with Golisano Children’s Hospital’s Division of Pediatric Orthopaedics and public relations team to share this amazing story following Maddox Duran, a baby born with clubbed feet, through his course of treatment. Watch the story here. 

These are just a few of the incredible stories that come out of Golisano Children’s Hospital every day. We invite you to share your story, by emailing sandy@urmc.rochester.edu. For more heartfelt stories, visit www.givetokids.urmc.edu. We look forward to sharing even more of these inspiring stories in the new year.

What was your favorite story from last year? 

We have high hopes for the future, with plans for a brand new Golisano Children’s Hospital underway and a host of pediatric programs that need an extra nudge to become truly phenomenal. Please consider lending your support to Golisano Children’s Hospital by donating online or by making a check out to:

Golisano Children’s Hospital
300 East River Road
Box 278996
Rochester, New York 14627

If you’d like to become a member of our Caught Doing Something Good gallery, please snap a photo of yourself and email it to sandy_strong@urmc.rochester.edu. We’d love to thank you publicly for your generous donation.

For more reasons to give, check out some of the many ways our region’s only children’s hospital currently serves our community:

• Golisano Children’s Hospital at the University of Rochester Medical Center offers high quality health care for more than 74,000 children and their families each year. By day, it serves as many as 650 children in its clinics and 160 in its hospital. Its pediatric emergency department (ED) performs more than 23,000 patient evaluations and treatments each year.
• With 124 beds, Golisano Children’s Hospital is the area’s only children’s hospital, and serves as the referral center for all seriously ill or injured children from the 17-county Finger Lakes region – though patients come from all 62 New York counties, seeking specialty care ranging from congenital heart defects and neurosurgery to lung disease and eating disorders. Watch this video to learn about our Pediatric Transport Program.
• Golisano Children’s Hospital is committed to treating all children regardless of their family’s ability to pay – and, as one of 170 North American children’s hospitals affiliated with the not-for-profit Children’s Miracle Network Hospitals, 100 percent of all locally-made donations stay to work locally.
• The Pediatric Intensive Care Unit/Pediatric Cardiac Intensive Care Unit, which opened in December 2004, is the largest intensive care service for children in western and central New York, serving more than 800 children each year.
• Golisano Children’s Hospital performs about 21,300 pediatric surgeries and procedures annually. The pediatric-use-only William & Mildred Levine Surgical Suite, which opened in June 2006, has a family-friendly design and allows parents to be near their children almost every moment that they are not in actual surgery. Watch this video from our pediatric surgery child life specialist Geri Sehnert to learn how to prepare your child for surgery.

• The hospital’s Children’s Heart Center is the only center in western New York that offers a full range of interventional procedures for patients with congenital heart disease – among them, arrhythmias, atrial septal defects and transposition of great arteries. The center sees more than 6,000 patients a year and provides the latest in technologies and techniques, including pediatric echocardiography services and a pediatric catheterization program. The hospital’s leading pediatric cardiac surgeon, George Alfieris, M.D., performs about 250 surgeries a year. Watch this video from the Children’s Heart Center’s social worker Jen Tillou.
• The 52-bed neonatal intensive care unit (NICU) is rated a level-IIID facility – the highest in American Academy of Pediatrics and state designation and the only one of its kind in the Finger Lakes Region. Providing the best quality of care for sick and premature babies, the NICU admits 1,100 newborns each year – or about 8 percent of births – most of which are born at Strong Memorial Hospital, which serves as the Regional Perinatal Center for high risk obstetrical service.
• The Andrew J. Kirch Developmental Services Center is a multidisciplinary program providing quality, individualized evaluations and services to families, community groups and professionals that care for children with developmental delays and disabilities. The Kirch Center houses the hospital’s autism program, which includes a nationally renowned group of specialists.
• Golisano Children’s Hospital has a Ronald McDonald House within the Hospital. The House – which is only the fourth of its kind in the world, and the first in the Eastern U.S. – offers respite to parents that need to be close those children in the most critical conditions. Watch this video to see what this wonderful organization is able to provide to families.

Thank you and we wish you all a very safe, happy and healthy New Year!

Evan Cavagnaro, a NICU grad, has defied expectations. Click on the photo to watch a video about all that this first grader has been through.

“Just like riding a bike, life can be an uphill climb.” Casey Bortnick from YNN Rochester starts his story about the Cavagnaro family with an important message about the road that lies ahead for many babies born prematurely. Yet despite the incredible obstacles that Golisano Children’s Hospital‘s tiniest patients are faced with, they rise to the occasion, time and time again — growing stronger and defying expectations.

This week, as we celebrate the holiday season, we wanted to share three stories of small miracles who have made amazing strides.

• The first story is about Evan Cavagnaro. Born four months before his due date, Evan was just 1 pound, 4 ounces, when he came into the world. Now in first grade, Evan has come a long way. Watch this video about Evan’s journey from YNN Rochester.
• From day one, Krista Celso knew her baby girl Olivia would be a fighter. Olivia, who was born at less than 1 pound, will celebrate her first holiday season at home with her family this year. Read Olivia’s story here.
• You’re in for a real treat with this one. After receiving our happy holidays e-newsletter, a grateful mom shared this video with us. We were blown away by the angelic voice and impressive pipes we heard in this video of her son, Nicholas, who was born prematurely at 26 1/2 weeks gestation, weighing less than 1.5 pounds.

To learn about how we’re hoping to enhance Golisano Children’s Hospital’s Neonatology program, which has been ranked as among the best in the nation, visit this section of the Planning for our Future page.

This holiday season, we’d like to express our sincere gratitude for everyone who has helped support Golisano Children’s Hospital. Thank you, for helping make miracles happen right here, in our own community. We wish you and your loved ones all the best now and in the coming new year!