Yale-New Haven is CT's Top Hospital; Regional Rankings Include Eight Hospitals in State

The top ranked hospitals in Connecticut were Yale-New Haven Hospital, Hartford Hospital, and Danbury Hospital, followed by Greenwich Hospital, Middlesex Hospital, St. Francis Hospital and Medical Center, Waterbury Hospital and St. Vincent’s Medical Center in Bridgeport.  That is the status in the annual U.S. News and World Report ranking of the nation’s best hospitals, released this week. Only Yale-New Haven broke into the ranks of the nation’s best, earning national rankings in eight adult specialties – including to rankings among the nation’s ten best - and six pediatric specialties.  Among the adult specialties, Yale-New Haven ranked #8 in the nation in diabetes and endocrinology,#10 in psychiatry, #21 in pulmonology, #22 in Gastroenterology & GI Surgery and #25 in geriatrics.  Yale-New Haven’s national rankings in particular specialties also included #27 in gynecology, #42 in the nation in cancer, and #43 nationally in ear, nose & throat care.  

Yale-New Haven Hospital is a 1,571-bed general medical and surgical facility with 54,412 admissions in the most recent year reported, according to US News. It performed 16,886 annual inpatient and 22,990 outpatient surgeries, and its emergency room had 141,422 visits.

Among pediatric specialties, Yale-New Haven ranked #5 in diabetes & Endocrinology, and in the top 50 in cancer, gastroenterology & GI surgery, neonatology, neurology & neurosurgery, and pulmonology.

Hartford Hospital, ranked second in the state, is a general medical and surgical hospital in the state's capital city.  It performed nearly at the level of nationally ranked U.S. News Best Hospitals in four adult specialties, according to the publication.  Hartford Hospital has 798 beds. The hospital had 37,997 admissions and performed 11,905 annual inpatient and 24,679 outpatient surgeries. Its emergency room had 99,811 visits. Like Yale-New Haven, Hartford Hospital is a teaching hospital.

Considerably smaller in size and scope, Danbury Hospital ranked third amongst Connecticut hospitals.  Danbury Hospital is a general medical and surgical hospital, with 344 beds. It is also a teaching hospital. Survey data for the latest year available shows that 70,622 patients visited the hospital's emergency room. The hospital had a total of 17,862 admissions. Its physicians performed 4,322 inpatient and 10,811 outpatient surgeries, according to data cited by U.S. News.

U.S. News analyzed over 5,000 hospitals for adult and pediatric care to find the best in the nation, based on critical criteria and patient outcomes.  Top-ranked hospitals include University of Texas MD Anderson Cancer Center in Houston (No. 1 in the nation in Cancer), the Cleveland Clinic in Ohio (No. 1 nationally in Cardiology & Heart Surgery) and the Hospital for Special Surgery in New York, New York (No. 1 in Orthopedics). They also include 15 hospitals that ranked among the top 20 nationally in at least half a dozen different specialties, earning them each a berth on the Best Hospitals Honor Roll. Massachusetts General Hospital in Boston topped that list.

The publication indicated that in all, just 137 hospitals – less than 3 percent of all of those in the nation – earned a national ranking in at least one specialty. But while those medical centers stand above the rest in providing complex specialty care, they aren't the only ones deserving of patients' attention according to the US News editorial team on the project.  The top hospitals - reaching the publication's Honor Roll of 15 hospitals - included Massachusetts General Hospital at #1, Mayo Clinic at #2, and Johns Hopkins at #3.  Another New England hospital making the Honor Roll, at #6, is Boston's Brigham & Women's Hospital.  

Underscoring the frequency with which various medical procedures are done, US News highlighted the statistics:  “Over the next 12 months, more than 1 million Americans will have surgery to replace a hip or knee. Approximately 400,000 will have heart bypass surgery. About 900,000 will be hospitalized for congestive heart failure and another 700,000 or more for the respiratory condition called COPD.”  These are among the most common procedures and conditions that hospitals encounter, according to the publication, and the core of their rankings system.

White House Conference on Aging Has Connecticut Connections

It is a once-a-decade event that will feature the President of the United States and other senior administration officials. The White House Conference on Aging (WHCOA), first held a half-century ago and a key driver of federal policy towards the nation’s seniors, will be a conference reliant on digital technology befitting 2015. Rather than having delegates from throughout the nation stream into Washington, D.C., Americans are asked to watch events unfold via live stream – either at home, or by getting together with co-workers or people from their local communities.  Officials note that more than 600 public and private Watch Parties—in every state—have been organized and registered with WHCOA.

According to the WHCOA website, there are four “watch party” sites in Connecticut, where people can gather to watch the live video feed together. The sites are in Hamden at the Whitney Center, in Norwalk at Home Care 100, in Waterbury at the Western CT Area Agency on Aging, and in West Hartford at Hebrew Healthcare.  The WHCOA has produced a Watch Party Discussion Guide to encourage dialogue during the event, in addition to listening to speeches emanating from the White House.

Earlier this year, regional forums leading up to the WHCOA were held in Tampa, Phoenix, Seattle, Cleveland and Boston.  Lisa Ryerson, President, AARP Foundation President, moderated the panel in Boston, which explored the topics of healthy aging and long-term services and supports. Panelists included Jewel Mullen, Commissioner, Connecticut Department of Public Health and President, Association of State and Territorial Health Officials.  The Boston  Regional Forum, held on May 28, 2015, was the fifth and last in the series of regional forums, coordinated with the Leadership Council of Aging Organizations, a coalition of more than 70 of the nation’s leading organizations serving older Americans.

In addition, Connecticut’s Department on Aging, Legislative Committee on Aging and Commission on Aging held a public hearing in May at the Legislative Office Building highlighting issues impacting the state’s seniors, with the testimony from that day being shared with WHCOA officials. Connecticut officials noted that Connecticut is undergoing a “permanent and historic transformation” in its demographics, and currently has the nation’s 7^th oldest population.  Between 2010 and 2014, Connecticut’s population of people age 65 and older is projected to grow by 57 percent, while at the same time the population of individuals between age 20 and 64 will grow by less than 2 percent.

Monday's WHCOA  begins with a welcome from Valerie Jarrett, Senior Advisor and Assistant to the President for Intergovernmental Affairs and Public Engagement, being introduced by Bernard Nash, Caregiving in America Panel.  An early morning panel is to be moderated by actor David Hyde Pierce and will include Secretary Robert A. McDonald, U.S. Department of Veterans Affairs; Ai-jen Poo, Caring Across Generations; Harry Leider, The Walgreen Company; Frank Fernandez, BluePlus, BCBS Minnesota Foundation; and Britnee Fergins, Caregiver.

Remarks by President Barack Obama, will be followed by a panel on “Planning for Financial Security at Every Age” moderated by Secretary Tom Perez, U.S. Department of Labor.  The panel will include Jean Chatzky, AARP Financial Ambassador; Vickie Elisa, Mothers’ Voices Georgia; Robin Diamonte, United Technologies Corporation; and Andy Sieg, Merrill Lynch Bank of America.

Diamonte, UTC’s Chief Investment Officer, was voted CIO of the Year in April by her peers in the Investor Intelligence Network (IIN), an online forum of senior financial decision-makers. IIN is part of Institutional Investor PLC, a leading international business-to-business publisher best known for its Institutional Investor magazine.  Diamonte is responsible for overseeing UTC’s $52 billion in global retirement assets, including $24 billion in domestic pension plans, $7 billion in foreign pension plans and $21 billion in the defined contribution plan.

Following the panel that includes Diamonte, viewers will hear remarks from Nora Super, Executive Director of the 2015 White House Conference on Aging and Cecilia Muñoz, Assistant to the President and Director of the Domestic Policy Council.

Also delivering remarks or participating in panels are Secretary Tom Perez, U.S. Department of Labor; DJ Patil, White House Office of Science and Technology Policy; Secretary Tom Vilsack, U.S. Department of Agriculture; professional athlete Diana Nyad; Vice Admiral Vivek Murthy, U.S. Surgeon General; Director Richard Cordray, Consumer Financial Protection Bureau; and Stephanie Santoso, White House Office of Science and Technology Policy.

In addition, Kevin Washington, President and CEO of the YMCA, will be a member of a panel on The Power of Intergenerational Connections and Healthy Aging.  Washington, who formerly led the YMCA in Hartford, was honored last month by The Amistad Center for Art & Culture in Hartford for his leadership, noting that he is the first African American to lead the nation’s YMCA organization.

Throughout the day, individuals are asked to “Tweet us your questions using #WHCOA and we will pass them along to our experts participating on panels at the conference.” People are also asked how they would finish the sentence: “Getting older is getting better because …”? A PDF form can be downloaded and then sent along to WHCOA officials.  Interviews with older adults can be uploaded to be archived in the Library of Congress, and people are encouraged to share their interviews on social media using the #WHCOA hashtag.

https://youtu.be/gdAWa6wNYXs

AngelRiders Bicycle Across Connecticut to Help Children with Life Threatening Diseases

AngelRiders will pedal from the northwest hills of Connecticut down to the Mystic shoreline — totaling 135 miles over a two day stretch. It is a charity bike ride like no other, according to organizers, with the goal to raise money to support children who are battling life threatening diseases. More than 300 riders from across Connecticut are expected to participate in the 12th Annual AngelRide (#AngelRide #NeverStopClimbing), which will be held over Memorial Day weekend. Adult riders have the option to participate in a one or two day trek, May 23 and 24. There are also shorter rides for teens and children on Sunday.

The charity ride — named for Angela "Angel" Uihlein of Westbrook — began in 2004 with 32 riders raising $67,000. Angela was diagnosed with leukemia at the age of 12 and attends the ride each year with her family. She has been in remission since the ride started and is now a registered nurse.

Growing steadily year after year, AngelRide has raised $4.6 million to benefit the Hospital Outreach Program (HOP) run by the Hole in the Wall Gang Camp in Ashford. HOP brings the hopeful, playful spirit of camp to children and families in a hospital setting. In 2014, HOP covered 39 hospital sites in Connecticut Massachusetts, New Jersey, New York, Pennsylvania and Rhode Island, where 28 specialists made nearly 32,000 hospital visits to sick children in need of joy and laughter.

“There is no other bike challenge like this one,” said Lynn McCarthy, AngelRide co-founder of Lyme. “We have been able to grow primarily by word of mouth because of the amazing experience it offers. We pay attention to the details, serve great food along the way and provide an overnight adventure at the Hole in the Wall Gang Camp.” AngelRide is the only organization that has been granted the privilege to stay overnight at the camp.

Connecticut riders return year after year to the AngelRide — some to ride and some to volunteer for the statewide event.  Westbrook resident Dan Shapiro was the first rider to register in 2004, and he has been participating in the AngelRide every year since. “I couldn’t imagine Memorial Day weekend without AngelRide,” said Shapiro. “The spirit of this ride is off the charts. We are all trying to do something bigger for the kids.”

West Hartford resident Keith Knowles has been involved with AngelRide for the last 10 years, either as a rider, volunteer or web site developer. This year, his 8-year-old daughter Emily will become an AngelRider. “I am going to ride six miles because I had a sister who passed away from cancer when she was only 5 years old. She is my motivation and inspiration for doing this,” said Emily.

Knowles sees the ride as a metaphor for the journey of sick children. “The hills we face are nothing compared to the hills the kids face. I'm not a cyclist. I don't train too much. Pedaling through the climbs one slow churn at a time and reaching the finish line is humbling experience. I know it's not nearly as difficult as battling cancer or some other life threatening disease,” he said.

There are many options for AngelRiders:

• Two-Day Ride: Ride 135.4 miles across Connecticut over the course of two days. The two-day ride begins in Norfolk, and extends 85 miles to the Hole in the Wall Gang Camp in Ashford. Day two begins at camp and ends 50 miles away in Mystic.
• One-Day Ride: Sunday only, ride 50 miles from the Hole in the Wall Gang Camp to Mystic.
• Young Adult AngelRide: For ages 11-14, this 22-mile ride begins in Hopeville State Park on day two and ends in Mystic.
• Young AngelRide: For ages 7 to 11, this is a 6.5 mile ride in Mystic.

Southington resident Tom Wood looks forward to ride each year and continues to recruit new people to either ride or volunteer. This year will be his eighth year as an AngelRider, which he does in honor of his brother who died of leukemia. “This is a great way to recharge your batteries. We have such an amazing and beautiful state. And it is not flat, so this is really a great challenge to undertake.”

“The renewal of body and spirit is exactly what the Hole in the Wall Gang Camp and HOP brings to a child with a life threatening condition,” said Dr. Brad Jubelirer, Assistant Clinical Professor of Pediatrics, UCONN School of Medicine in Farmington.

To find out more or to register for AngelRide, visit www.angelride.org . Registration remains open and encouraged; volunteers and donations are also welcome.

https://youtu.be/-r95hwj8DIw

Support of American Heart Association Brings Benefits to Connecticut

The Greater Hartford Heart Walk, a noncompetitive 5K walk held annually each fall by the local affiliate of the American Heart Association, is one of many similar endeavors around the state by nonprofit organizations seeking to raise awareness and raise funds – and one of three organized annually by the American Heart Association in Connecticut. What is often overlooked, especially when the sponsoring organization bears a well-known national name, are the array of benefits that result close to home.   The American Heart Association is a case in point.

Cardiovascular diseases and stroke are the #1 cause of death in Connecticut. Last fall, just over 1,500 walkers at the Greater Hartford walk helped to raise nearly $190,000 to support research, advocacy and awareness of cardiovascular disease and stroke.  That money does not simply disappear into a giant national pool of funds – much of it finds its way back to Connecticut.

The organization currently supports 43 research studies in Connecticut with awards totaling $9,300,533, officials report.  The grants and fellowships help to advance discovery, interpretation and delivery of new knowledge to spur improvements in cardiovascular health.  Among those supported by awards from the American Heart Association are researchers on the University of Connecticut campus in Storrs, the UConn Health Center in Farmington, Yale University and the Yale University School of Medicine.

The organization’s Greater New Haven Heart Walk will take place on Saturday, May 2 at Savin Rock. The event is hoping to raise over $340,000.  [Walk registration will begin at 9:00 a.m. and the walk will kick off at 10 a.m. with a walk along Savin Rock Beach.]  The Greater New Haven Heart Walk is part of the American Heart Association’s national healthy living initiative, My Heart. My Life. The program focuses on improving nutrition, physical activity and children’s health, helping individuals and families understand how to make incremental changes for a substantial long-term health impact.

The American Heart Association also urges employers to “create a culture of physical activity and wellness so that we may all live longer, heart healthy lives.”  The local chapter, based in Wallingford, works with Connecticut corporations to become a Fit Friendly Worksite.

Through the Fit-Friendly initiative, the American Heart Association provides free tools for worksites and employees including a Healthy Workplace Food and Beverage Toolkit, walking and physical activity programs, worksite wellness materials, and more.  Eligible worksites can then receive recognition by the American Heart Association at local events and in recognition program communication materials including an Annual Honor Roll published on the organizations website and other amenities.  In Connecticut, 40 companies have been designated as Fit Friendly Companies and in Massachusetts, 78 companies are committed to better employee health.

“More than two-thirds of American adults are overweight or obese putting them at risk for heart disease and stroke”, said American Heart Association Connecticut and Western Massachusetts Executive Director Dina Plapler. “Making healthy changes in the workplace, where many adults spend much of their day, is an important way to help people be healthier”.

The annual Greater Hartford Go Red For Women Luncheon, another well-attended education and fundraising event, celebrated its 10th anniversary this year.  The March 18 event at the Connecticut Convention Center included survivor speaker, Leigh Pechillo.  A native of Connecticut, Leigh experienced sudden cardiac arrest on Mother’s Day, May 11, 2014.  She was fortunate that her husband knew CPR and helped to save her life.  Her husband, daughter and son were presented with a Heart Saver Award by American Heart Association President, Nancy Brown at the event.  The event raised over $400,000 to benefit women’s heart health.

The Go Red For Women initiative is dedicated to making an impact in the community through education and fundraising to fight the number one killer of women, heart disease. Heart disease and stroke account for 31.1 percent of all female deaths in Connecticut and on average, nearly 13 women die from heart disease and stroke in Connecticut every day.

For more information on the Greater New Haven Heart Walk go to www.newhavenheartwalk.org. Other Heart Walks taking place in Connecticut this year include the Rocky Neck Heart Walk on Sunday, September 27 at Rocky Neck State Park and the next Greater Hartford Heart Walk on Saturday, October 3.  For more information on these events and more, visit www.heart.org/connecticut.

CT Would Be 22nd State to Require CPR Training in High School

Connecticut is poised to become the 22th state to pass legislation requiring CPR training as a high school graduation requirement, according to data from the American Heart Association and the National Center for Education Statistics. The state legislature’s Public Health Committee approved a bill last week that would establish the requirement in Connecticut schools, following passionate testimony supporting it, from the public and legislators.  The bill must be approved by the House and Senate before moving on to Governor Malloy to sign into law.

West Virginia recently became the 21st state to pass a CPR bill, which was signed into law by that state’s Governor earlier this month. A similar bill is now being considered by state legislatures in Missouri and Florida.

Every hour in the U.S. approximately 48 people will have a cardiac arrest event outside of the hospital. Nine out of ten people will not survive. However, if lifesaving CPR is performed, a victim’s chance of surviving can double, or even triple, according to the American Heart Association.

The AHA is among the organizations supporting the legislation, working in Connecticut and across the country to pass state laws “that will assure all students are trained in life-saving CPR before they graduate from high school.”  In addition, a website, becprsmart.org, has been developed to provide information related to the national initiative.

The organization’s CPR in School Training Kit is portable, durable, designed to train 10 to 20 students at once, and comes with “everything you will need to quickly and easily teach your students,” the AHA website points out, noting that “one CPR in Schools Training Kit can train hundreds of students!”

In testimony at the Connecticut State Capitol, Elizabeth Schiller, president of the Connecticut College of Emergency Physicians, said that CPR “may mean the difference between life and death. By instituting education at the high school level, young adults will become familiar with the process and hopefully will feel comfortable assisting others in a time of need.”

The CPR in Schools Training Kit empowers students to learn the core skills of CPR in under 30 minutes, and it teaches AED skills and choking relief, according to the AHA. Described as an “easy-to-use kit,” it is designed “specifically for the needs of school educators. It’s portable, allowing for convenient movement from classroom to classroom and easy storage. It’s also reusable.”

The CPR in Schools Training Kit was developed by the American Heart Association and “incorporates the very latest science.”  The American Red Cross also offers a range of first aid courses for students, including CPR.

https://youtu.be/G68pDlloGZI

Additional information:  www.cprcertificationtrainingonline.com/

Tough New Anti-Smoking Ads to Air in Connecticut, Nationwide

The Centers for Disease Control and Prevention is launching its 2015 “Tips From Former Smokers” campaign with a series of powerful new ads featuring former smokers who suffer from smoking-related illnesses, including vision loss and colorectal cancer. Ads also highlight the benefits of quitting for smokers’ loved ones, and the importance of quitting cigarettes completely, not just cutting down. Cigarette smoking kills more than 480,000 Americans each year and remains the leading cause of preventable death and disease in the United States. For every American who dies from a smoking-related disease, about 30 more suffer at least one serious illness from smoking.

Beginning March 30, the ads will run for 20 weeks on television, radio, billboards, online, and in theaters, magazines, and newspapers. Connecticut is included in the national ad buy, which includes cable TV, magazine, and digital media, according to CDC officials. 

Data from the Centers for Disease Control and Prevention indicate that in 2013, 15.5 percent of Connecticut adults were smokers.  This was lower than the national average of 18.1 percent, and lower than the other New England states, which ranged from 16.2 percent (New Hampshire) to 20.2 percent (Maine).

CDC’s successful Tips national tobacco education campaign has helped prompt millions of smokers to try to quit since it began in 2012, officials said. It has also proven to be a “best buy” in public health by costing just $393 to save a year of life.

“These former smokers are helping save tens of thousands of lives by sharing their powerful stories of how smoking has affected them,” said CDC Director Tom Frieden, M.D., M.P.H.  “These new real-life ads will help smokers quit, adding years to their lives and life to their years.”

In 2014, Tips ads had an immediate and strong impact. When the ads were on the air, about 80 percent more people called the national quitline, CDC officials noted, for free help. Since 2012, Tips ads have generated more than 500,000 additional calls to the toll-free quitline number, 1-800-QUIT-NOW.

Nationally, about 3 in 4 adult e-cigarette users also smoke cigarettes. If you only cut down the number of cigarettes you smoke by adding another tobacco product, like e-cigarettes, you still face serious health risks, according to CDC offcials. Smokers must quit smoking completely to fully protect their health -- even a few cigarettes a day are dangerous, they emphasize.

The agency website, www.cdc.gov/tips, includes personal stories from the campaign.  The website also includes detailed assistance developed by the National Cancer Institute to support smokers trying to quit.

Besides the human cost, smoking takes a devastating toll on the nation’s economy, CDC officials point out. Those costs exceed $300 billion a year—nearly $170 billion in direct medical care for adults and more than $156 billion in lost productivity.

The Tips campaign serves as an important counter to the more than $8.3 billion spent annually by the tobacco industry to make cigarettes more attractive and more affordable, particularly to young people, officials said.

https://youtu.be/GEWky9PEroU

Boston Children’s Hospital Delights with Interactive Wall Developed at UConn

It lives in Boston, but was built at UConn.  Boston Children’s Hospital’s recently installed Interactive Media Wall is an immense, high-tech, engagingly interactive product of the University of Connecticut’s Digital Media and Design program – a collaboration of students and faculty that is bringing smiles to children and families who encounter the massive 30-foot wall in the facility’s reconstructed lobby. For a team of animators accustomed to designing for screens a few inches across, the task of designing a scene three stories high was daunting – but a challenge they took on energetically.  The electronic wall consists of a large high-definition video screen, and a series of cameras and sensors that observe the presence and movement of people in the space below it, allowing people entering the space to control what appears on the screen.  It can be a powerful experience, for children and adults, as their movement defines the action on screen.

Rather than just showing a pretty picture, the wall hopes to offer some therapeutic benefit to the children who interact with it, in support of the mission of the hospital, which is widely considered one of the best pediatric hospitals in the world.

“The idea was to empower emotionally and physically challenged children to take control of something in their life, at a time when things were spinning out of control,” Tim Hunter, Department Head of Digital Media & Design and Director of the Digital Media Center told UConn Today.

How did a major healthcare facility in Boston connect with Connecticut’s flagship university for the project?

Prior to joining UConn’s faculty in 2007, Hunter spent 25 years developing and producing national and international design projects through his New York City based company. His areas of expertise are in digital animation design & production, digital media design & production, lighting design, scenic design and video projection design.

Through that firm, he had worked for many years with Boston-based Elkus/Manfredi Architects, which in turn worked with Boston Children’s Hospital on various projects.  When the project to renovate the facility’s lobby came along, the architects suggested that hospital leadership contact Hunter to see what he would envision as a centerpiece, interactive experience. 

It was a good match.  Initial work began on the project at UConn in the fall of 2011, accelerating during the spring 2012 semester.  Plans called for the UConn Digital Media Center faculty and students to develop a unique imaging and sensing system that would be controlled by guests of the hospital as they traveled through the lobby.  The work was completed in mid-November 2014, and has been well-received by patients, visitors and staff, earning a not-to-be-missed following.

The UConn team drew on the expertise of faculty members from a broad range of disciplines. Experts in child psychology, in human behavior, and in several disciplines of computer science and engineering contributed to the development of the installation.

That kind of collaboration was critical to the success of the wall, says Hunter, even though such projects are not usually developed at an academic institution. “A university is not the first place you would look for something like this,” said the industry veteran-turned-educator.

Among the students participating in the project were William Pritchard, interaction design and project management; Somaiyeh Ghaffarnia, animation and character development; Sean Dexter, 3D animation; Kevin Richetelli, 2D animation; Samantha Menza, game design; Tom Lee, game design and music composition; and Tiffany Hoang, game design. Prtichard and Ghaffarnia began working on the project as undergrads and continued while pursuing their graduate degrees.  The other students were undergrads.

UConn faculty involved in the project, along with Hunter, were Samantha Olschan, animation and character development; Mike Vertefeuille, technology and installation; and Zsolt Palatinus, data mathematician.  Also participating were staff member Michael Toomey, interaction design and project management, and CHIP members Tim Gifford and Christian Wanamaker, engineering and coding.

There may be more to come.  UConn’s Digital Design department – with students in Storrs and Stamford - and Boston Children’s Hospital now have an ongoing relationship, with plans for UConn to develop new interactive experiences for the next five years.

https://youtu.be/DD7gk2kHP3g

3 Cities, 3 Towns from CT Take Up National Challenge on Pedestrian, Bicyclist Safety to Launch Thursday

Six Connecticut towns and cities are among the first 150 in the nation to respond to a challenge issued by U.S. Secretary of Transportation (USDOT) Anthony Foxx aimed at promoting bicyclist and pedestrian safety.  The year-long nationwide initiative will officially kick-off this Thursday. The chief elected officials of the cities of Hartford, Stamford, and Bridgeport, and the towns of Glastonbury, Simsbury, and South Windsor have signed on to the Mayor’s Challenge, announced earlier this year at the annual meeting of the U.S. Conference of Mayors.  The Mayors’ Challenge for Safer People and Safer Streets is a call to action by Secretary Foxx for mayors and local elected officials  to take significant action to improve safety for bicycle riders and pedestrians of all ages and abilities over the next year.

The challenge is based on the 2010 USDOT Policy Statement on Bicycle and Pedestrian Accommodation to incorporate safe and convenient walking and bicycling facilities into transportation projects. In the policy statements, USDOT recognizes the many benefits walking and bicycling provide — including health, safety, environmental, transportation, and quality of life.

The challenge calls on Mayors, First Selectmen and other chief elected officials to:

• Issue a public statement about the importance of bicycle and pedestrian safety
• Form a local action team to advance safety and accessibility goals
• Take local action through seven Challenge activities (listed below)

In Connecticut, the advocacy organization Bike Walk Connecticut is urging Connecticut's chief elected officials to participate in the challenge and engage their residents in carrying out the initiative’s objectives. They applauded Foxx, a former Mayor of Charlotte, N.C., for making “bicycle and pedestrian safety is his signature issue as the head of USDOT.”

The challenge activities, as outlined by USDOT, include:

• Take a Complete Streets approach
• Identify and address barriers to make streets safe and convenient for all road users, including people of all ages and abilities and those using assistive mobility devices
• Gather and track biking and walking data
• Use designs that are appropriate to the context of the street and its uses
• Take advantage of opportunities to create and complete ped-bike networks through maintenance
• Improve walking and biking safety laws and regulations
• Educate and enforce proper road use behavior by all

A total of 154 cities nationwide have signed on as of March 6, with the official kick-off later this week in Washington, D.C.  Additional municipalities in Connecticut and across the country are expected to add their names to the list of participating cities.  USDOT has invited Mayors' Challenge participants to attend the Mayors' Challenge Summit kick-off event at USDOT’s Headquarters’ office in the nation's capital on Thursday, March 12. The Summit will bring together participating cities to network and learn more about the Challenge activities, and USDOT staff members will share the resources and tools available to help cities with Challenge activities.

Federal officials note that the lack of systematic data collection related to walking and bicycling transportation, such as count data, travel survey data, and injury data, creates challenges for improving non-motorized transportation networks and safety. Communities that routinely collect walking and biking data, they point out, are better positioned to track trends and prioritize investments.

In advocating a “complete streets” approach, USDOT emphasizes that complete streets “make it safe and convenient for people of all ages and abilities to reach their destination whether by car, train, bike, or foot” and they call for “a policy commitment to prioritize and integrate all road users into every transportation project.”

Bike Walk Connecticut has reported that there were 49 bicycle or pedestrian fatalities in Connecticut in 2012, the most recent data available.  There were an additional 1,226 injuries to bicyclists or pedestrians.  In total, from 2006 to 2012, there were more than 10,000 injuries and nearly 300 fatalities from crashes involving pedestrians or bicyclists, according to the organization, based on federal and state data.

Hospital Outreach Program, New Website and Video Advance Mission of The Hole in the Wall Gang Camp

The Hole in the Wall Gang Camp in Ashford, Connecticut began in 1988 as a way for seriously ill children, including those with cancer, to “raise a little hell,” as founder Paul Newman described it – a time and place when kids could simply be kids, without being self-conscious about their ongoing medical needs.  Twenty-seven years later, it is much more than a summer camp, offering a robust range of programs year round, in Connecticut and beyond. To tell that story, and increase public awareness of the array of programs available to children with acute medical needs, the Camp has launched a newly redesigned website (www.holeinthewallgangcamp.org) that eases navigation through the various program offerings, and produced a new video that highlights the range of activities and impact.

Among the programs highlighted is the less widely known Hospital Outreach Program (HOP), one of a number of programs that have blossomed in recent years to extend the mission and impact of The Hole in the Wall Gang Camp into communities to reach more children.

Through one-on-one interactions and group activities, HOP “brings Camp’s unique summer programming and spirit to hospitals and clinics. Whether working bedside, in playrooms or outpatient clinic settings, our interactions and activities with children and families include arts & crafts projects, and interactive games specifically adapted for use in the medical setting, as well as other Camp-inspired programming and events. Just like at Camp, all interactions are guided by the child’s choice and are child-driven,” the website explains.

Responding to the fact that children in the hospital often feel isolated, fearful, stressed, and uncertain because of their illnesses, the Hospital Outreach Program “brings the hopeful, playful spirit of The Hole in the Wall Gang Camp to children, families, and their caregivers in the hospital setting, at no cost, year-round on a weekly basis.”

The HOP program has expanded to 35 medical facilities in Connecticut, Massachusetts, New York, New Jersey and Pennsylvania.  The Connecticut programs are offered at Connecticut Children’s Medical Center in Hartford, Yale-New Haven Hospital, Yale Pediatric Hematology and Oncology Clinic in Trumbull, and the Yale-New Haven Hospital’s Bridgeport Campus.

The HOP Specialists that provide one-on-one sessions visits “have a bachelor’s degree, excellent kid skills, experience developing fun and exciting programming and knowledge of hospitals systems. They attend both a HOP and Hospital Orientation and receive regular opportunities for professional development,” the website points out.

At Children’s Hospital of Philadelphia (CHOP) last fall, the facility was “transformed into Downtown Camp” for a week, as nearly 30 Camp staff and volunteers and more than 60 CHOP volunteers provided five full days of Camp programming. In all, there were “approximately 800 healing experiences with children and families throughout the week, bringing the safety, respect and love of Camp to many families” in Philadelphia.

Building on the success of the week, the Hospital Outreach teach is looking ahead to similar events across the network of partner hospitals.

Among the other programs offered during the year, in addition to the centerpiece Camp experience, are CampOut, which brings the Camp experience to campers in their own hometowns, weekend programs in Ashford in fall and spring, and Hero’s Journey for campers who have aged out of the summer program.  In addition, programs are offered for parents, caregivers and siblings of children participating in The Hole in the Wall Gang Camp.

http://youtu.be/P2516LEl6AM

CT Organization Leads Efforts to Increase Awareness of Rare Disesases

Rare Disease Day, observed on February 28, is an annual awareness day dedicated to elevating public understanding of rare diseases and calling attention to the special challenges faced by patients and the community. According to the National Institutes of Health (NIH), a disease is rare if it affects fewer than 200,000 people.  Nearly 1 in 10 Americans live with a rare disease—affecting 30 million people—and two-thirds of these patients are children. There are more than 7,000 rare diseases and only approximately 450 FDA-approved medical treatments.  Many rare diseases are chronic and life-threatening.

The National Organization for Rare Disorders (NORD), with national headquarters in Danbury and offices in Washington D.C. and Massachusetts, is a federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.

Rare Disease Day takes place every year on the last day of February (February 28 or February 29 in a leap year)—the rarest date on the calendar—to underscore the nature of rare diseases and what patients face.

In Connecticut this year, the Morgan Leary Vaughan Fund, Inc. (Morgan’s Fund), an all-volunteer public charity dedicated to Necrotizing Enterocolitis (NEC), will be holding a public awareness event on February 28 in Stratford. The organization’s inaugural event, Illumin8ing Rare, is designed to provide “a moment of reflection and appreciation for all those who have been directly affected by a rare disease,” organizers say, adding “it is an opportunity to celebrate survivors and to share tributes to those who are no longer with us.”

Morgan’s Fund mission is to promote public awareness about NEC and the potentially devastating effects it can have on preemies and their families, and to advance research to prevent, diagnose, treat, and ultimately, cure NEC. Named after Morgan, it celebrates his survival, courage and strength. Morgan and his twin brother were born at 28 weeks, nearly three months early and each weighing less than 2.5 pounds. At four days old, Morgan developed NEC and lost approximately 20 percent of his small intestine. Morgan not only survived but has also thrived since his bout with NEC. The fund is his family’s way of paying it forward.

NEC is an inflammatory disease that leads to necrosis (death) of the intestine. It is predominately due to prematurity and its statistics are startling. NEC is the second leading cause of death in premature infants. NEC is the 10th leading cause of infant death overall. NEC is a rare disease — occurring in approximately 25,000 babies per year in the United States. Despite extensive study, the cause of NEC is uncertain.

Earler this week, the UConn School of Medicine Disabilities Interest Group hosted a Rare Diseases Awareness Event on February 25th at the University of Connecticut Health Center, celebrating individuals who have rare diseases and the many researchers and physicians who are fighting to find cures for these conditions.

To raise awareness nationwide this year, NORD is coordinating a new social media campaign, #1in10, to highlight the 1 in 10 Americans living with a rare disease.  “It’s astounding that there are just as many Americans living with a rare disease as there are people who are left-handed,” said Lisa Phelps, director of marketing and community relations at NORD. “We are launching this campaign to help raise important awareness for this major public health issue and the need for safe, new treatments.”

To help support the #1in10 campaign, NORD has launched the Instagram account, @rarediseasedayUS.  Instagrammers are invited to tag @rarediseasedayUS in their photos and celebrations to share what’s happening now for Rare Disease Day.  Instragram members are invited to use the official Rare Disease Day hashtags #RDD2015 and #RareDiseaseDay and follow Rare Disease Day on Facebook (/RareDiseaseDay.US) and Twitter (@RareDayUS).

For more information about Rare Disease Day, go to www.rarediseaseday.us. or visit NORD’s website, www.rarediseases.org.

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