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.

http://youtu.be/DpIt8vH6xC8

State Report Calls for Tax Incentives, Better Insurance, Greater Flexibility to Improve Care for Rapidly Growing Older Population

A new report by the state legislature’s Commission on Aging, examining state funding and support for home and community-based care for older adults and individuals with Alzheimer’s Disease, has issued more than a dozen recommendations, including establishment of a Dependent Care Tax Credit, release of funds to support home modifications, and extension of paid sick leave to cover care of elderly relatives.  Incentives for employers to offer long-term care insurance coverage are also suggested. The Commission on Aging is a nonpartisan public policy and research office of the Connecticut General Assembly.  A law passed by the legislature last year charged the Commission with studying private sources of funding available to elderly persons and persons with Alzheimer's disease in need of home or community-based care, including the cost effectiveness of such programs funded by the state with recommendations on which state programs should be expanded.

Connecticut is the 7th oldest state in the nation.  Over 70,000 people age 65 and older live with Alzheimer’s Disease or another dementia, and disabilities affect 10.4 percent of all Connecticut residents – nearly 400,000 people. Due to factors including aging demographics and consumer choice, demand for home-care based services is expected to “increase exponentially in coming decades,” according to the report. Between 2010 and 2040, Connecticut’s population of people age 65 and older is projected to grow by 57 percent, with less than 2 percent growth for people age 20 to 64 during the same period.

The 23-page report noted that “informal caregivers are the backbone of the long-term service and support system. It is estimated that the economic value of the care provided by unpaid caregivers is $5.8 billion in Connecticut. Supporting caregivers is a cost effective means of reducing the reliance on costly formal care system.”  The report went on to caution that “without support, caregivers are likely to become emotionally and physically ‘burnt-out’ and find few options” short of turning to institutional care.

The report recommends amending the state tax code to include a Dependent Care Credit where the tax filer can receive a credit for care expenses incurred while a caregiver is working. Home care and adult day care costs are cited as examples of work‐related expenses that may be eligible.

To provide further support to informal caregivers, the report calls on the legislature to extend paid sick leave for those caring for an aging parent or other relative.  Connecticut’s law currently allows paid sick leave to be used for a worker’s own illness or injury, or to care for the worker’s child or spouse.  It does not extend to cover workers who care for a parent or other relative. 

Policies that “allow for flexibility” in work schedules are also urged, cited studies have shown such schedules not only are “an import way to support a caregiver but also… positively affect recruitment and retention efforts.”

The report urges the authorization of $6 million in bond money for home modifications and adaptive technology, which was allocated by last year’s legislature, and development of a list of “vetted home repair and home modification contractors and programs” to improve the likelihood that individuals would be able to “age in place.”

The goal, the report indicated, would be to “enable them to function with greater independence in the home, remain in the community and reduce the need for human assistance. Simple modifications include adding nonslip strips to bathroom floors or other smooth surfaces, improving lighting, providing telephones with large numbers and letters, and installing grab bars. More complex (and expensive) modifications include installing ramps, chair lifts, stair glides, widened doorways, roll-in showers, and lowered countertops.”

Among the other recommendations, the report urges professional development for those whose job it is to care for individuals with Alzheimer’s and dementia, to align with changing demographics in the state’s population.

The report also suggests that policy makers “explore the possibility of incenting employer-based long-term care insurance coverage.”  In 2009 almost 25,000 employers in the U.S. offered long-term care insurance to their employees – just 35 percent of the 7.5 million insurance policies in effect.  In addition, the report encourages the Connecticut Congressional delegation to support a federal tax deduction for long-term care insurance, and urges policy makers to consider making reverse mortgages “a more viable option.”

Additionally, the report also considers advances in technology in the care of older residents.  It describes “telehealth” as a mode of delivering health care, public health and certain non-clinical services using electronic communications technology, stating that it “represents an opportunity for Connecticut to improve access to care, coordination, quality and outcomes for individuals, all while reducing cost, promoting local economic health, and offering a patient-centered approach.”  The Commission on Aging calls on Connecticut to join at least 21 other states that have telehealth parity laws for private insurance, meaning that providers can collect reimbursement for telehealth services.

The report, “Study of Funding and Support for Home and Community-Based Care for Older Adults and Persons with Alzheimer's Disease,” also recommends that the state “address service challenges specific to housing, transportation and behavioral health,” including conducting “walkability audits” to assess sidewalks, crosswalks, and pedestrian access to essential services.  It also suggests that the state “explore the use of taxi vouchers, public and private paratransit services, paid and volunteer driver services, on-demand car rental services and other forms of transportation in the growing “shared mobility” economy.

Racial, Ethnic Disparities Common in CT Hospital Readmissions, Study Finds

An Hispanic patient hospitalized in Connecticut for heart failure is 30 percent more likely than a White patient to end up back in the hospital within a month, according to a study published in Connecticut Medicine, the journal of the Connecticut State Medical Society.  The study also found that a Black patient hospitalized for chest pain is 20 percent more likely to be readmitted within 30 days after discharge. The study was based on an analysis of the Connecticut Hospital Inpatient Discharge Database -admissions to Connecticut hospitals from 2008-2012. The findings, the study noted, “should serve as a catalyst for further investigation of the interplay between patient characteristics, hospital practices, community-based resources, and insurance coverage” in fostering “racial and ethnic disparities in health and healthcare.”

The multi-year study discovered significant and pronounced disparities in readmission rates for Black and Latino patients compared to White patients in 9 of 10 major diagnostic categories.

The Connecticut State Medical Society hosted a well-attended symposium last week highlighting its multi-year research into racial and ethnic disparities in readmissions.  The symposium, funded by the Connecticut Health Foundation, brought together physicians, nurses, patients, and other stakeholders from across the state. The stakeholders had an opportunity to review and discuss the CSMS research data, and also provided insight and interpretations of the disparities. The feedback will be integrated into clinical recommendations for care delivery models that may help to reduce the level of disparity in hospital readmission rates.

The symposium was designed to provide an opportunity to take a fresh look at these readmission disparities and determine more effective ways to address them. Stakeholders included physicians and other licensed health care providers; social service providers; healthcare/social service administrators, leaders, and managers; lawmakers and policy analysts; patients and their family members; healthcare consumers and patient advocates.  It focused on documenting potential best practices of the four conditions with the greatest racial and ethnic disparities in readmission rates, as determined in the study:  Uncomplicated Delivery, Joint Replacement Surgery, Heart Failure & Chest Pain, and Digestive Disorders.

The study also noted that “barriers to accessing community based care among Connecticut Medicaid beneficiaries are well-documented, often leaving such patients with few options other than hospital care for both urgent and non-urgent conditions.”

The study’s authors noted that “this study adds to a growing body of evidence on disparities in hospital readmissions in several important respects.”  First and foremost, they point out, “racial and ethnic disparities observed in this study were considerably more pronounced than disparities generally reported in previous studies.”

“We’re seeing large disparities in readmissions for a number of conditions,” Robert Aseltine, the study’s lead author and professor of behavioral science and community health at the University of Connecticut Health Center, told the Connecticut Health Investigative Team (C-HIT). “There’s no one factor that jumps out. There’s no simple answer. ” Co-existing health conditions and socioeconomic status, for example, “don’t explain everything away.”

In March 2014, a report by Mathematica Policy Research for the Robert Wood Johnson Foundation indicated that the U.S. Department of Health and Human Services observed a year earlier that “while overall quality is improving, access is worse and there has been no improvement in lessening disparities.” The report goes on to point out that there “appears to be a shift from the concept of disparities to one of equity. The shift provides more focus on action and social justice relevant to a wide variety of subpopulations.”

In 2010, when “nearly half of U. S. physicians identify language or cultural communication barriers as obstacles to providing high-quality care,” physician adoption of practices to overcome such barriers was described as “modest and uneven, according to a national study by the Center for Studying Health System Change (HSC).

The new Connecticut study was conducted by Robert H. Aseltine, Jr, PhD, Jun Yan, PhD, Claudia B. Gruss, MD, Catherine Wagner, EdD, and Matthew Katz, MS.