Western Connecticut Earns Acclaim for Performing Arts Center, Theater Program

It turns out that the phrase “build it and (they) will come” applies to more than a fictional baseball story.  At Western Connecticut State University, the new Visual and Performing Arts Center, opened last fall, is already drawing accolades, and with it a brighter spotlight on the school’s academic theater program. The latest one-two punch of notoriety comes from OnStage, a Connecticut-based blog dedicated to “promoting theatre from Broadway to your hometown,” with the announcement that Western’s Bachelor of Arts in Theatre Arts program is one of the 10 best in the country in 2015.  In addition, the facility itself has been ranked at #9 among the Top-25 "Most Amazing" Campus Arts Centers by the website CollegeDegreesResearch.net.

The website commended the facility’s “three wings separated by a lobby featuring a bridge which appears to float above stunning maple floors. The studio theater has a flexible stage that can be set as an oval, or round shape, or as a square, while the main stage theater has more of a traditional setup, and both have the latest in audio/visual technology. This 130,000 square foot beauty was finished just a few months ago and quickly earned LEED silver certification.”

Joining WCSU in the top 10 were performing arts centers at: California Polytechnic State University, Emerson College, Sonoma State University, University of North Texas, Rensselaer Polytechnic Institute, Emory University, Lynn University (FL), Soka University (CA), and University of Northern Iowa.  The institutions were praised for facilities that “possess great functional beauty and inspirational qualities.”

In naming WCSU’s theatre program to its Top-10 list, Chris Peterson, OnStage editor-in-chief, wrote:

“It’s very rare to find a state university commit as much to the theatre arts as WCSU has in the past couple years. This past fall they opened their brand new $97 million Visual and Performing Arts Center. This stunning new facility is home to a 350-seat theatre, a 125-seat studio theatre, a 350-seat concert hall, an art gallery, a recording studio and state-of-the-art rehearsal, classroom and studio art facilities.”

At number 10, WCSU rounds off a list that includes James Madison University, the University of Alabama, the Catholic University of America, Muhlenberg College, Drew University, Wesleyan University, Bennington College, Pepperdine University and Willamette University.

The comments aren’t limited to the facility, quickly moving on to the program offered by the state university, which maximizes its geographic proximity to New York City.

“The program at WCSU is also very strong. Students can receive their B.A. in Theatre Arts with concentrations in Performance, Design/Technology, Theatre Arts Management, Drama Studies or receive their B.A. in Musical Theatre. While learning from professional resident faculty, students will have the chance to participate in the Edinburgh Fringe Festival and an annual New York City Showcase, ‘WCSU Off-Broadway.’ They also do a ton of community outreach by performing children’s productions throughout the year… The tuition is quite reasonable for a state institution and given the quality of the program and the facilities you can work in, I’d say this is a steal.”

The university points out that "graduates of the school’s programs in art, music and theatre have become successful within the creative sector of our economy as performers, educators, designers, artists, and entrepreneurs."

The criteria used to determine the top ten, according to the website, included tuition/value, faculty, facilities, productions and resources beyond campus. Colleges with “both B.A. and B.F.A. degrees have incredible facilities and faculty because they have both programs; this list only contains schools that have B.A.’s alone.”  WCSU is part of the Connecticut State Colleges and Universitys (CSCU) system, which includes four state universities, 12 community colleges and the on-line Charter Oak State College.

https://youtu.be/irCxZNZk9Rg

Questionable Patent Claims Push Small Businesses to Pay Rather Than Fight; Congress to Again Consider Reforms

The odyssey began with a letter.  The owner of an Old Lyme small business, providing employment services for people with disabilities, was told that by scanning documents into emails, she was violating a patent.  In fact, every scan meant a $1,000 fine.  Pay $75,000, she was told, or face legal action. She ignored the first letter, hoping it was junk mail.  When a second, “scarier, and more threatening” arrived, she contacted an attorney, who put her in touch with a patent attorney.

What was happening was a phenomenon described as patent trolling.  The New York Times has described patent trolls as “people who sue companies for infringement, often using patents of dubious value or questionable relevance, and then hold on like a terrier until they get license fees. In recent years, patent trolls — they prefer “patent assertion entities,” or P.A.E.’s — have gone from low-profile corporate migraine to mainstream scourge.”

Roberta Hurley, the small business owner in Connecticut, describes them as “creepy people,” intentionally frightening business owners with a “big scam.”  They depend on the unknowing to pay the outrageous demands, afraid of being taken to court.

The company making the demand could not be reached by phone, and the letter had nothing more than a Post Office box for an address.  But the tone was nonetheless daunting.

“If you’re scared, you don’t understand patent infringement, don’t have the funds to hire an attorney, which is true of many mom and pop businesses, it’s easier to write a check to stop them,” Hurley observed.

She couldn’t afford the $75,000 being demanded – “I would have had to close my doors” – and decided she would fight, and did.  “I wasn’t doing it,” she recalled.

It took time, effort and energy, and a bill from her attorney, but ultimately the demands stopped.  The entire process went on for nearly a year and a half, ending in 2013.  Along the way, she testified in Washington, went public to the news media, and told everyone she could what was happening.

Patent trolls may not have succeeded in this instance, but often do.  As The Atlantic pointed out in an article on the subject, “Given the cost, many defendants are willing to pay the troll to avoid a lawsuit even if the suit is not justified.”

In 2013, American courts saw six times as many patent lawsuits as in the 1980s, a Boston Globe op-ed by the authors of “Patent Failure” reported last fall.  “Over the past decade, there has been a 900 percent increase in the number of businesses facing patent litigation.”  They added that “recent research estimated that defendants spent at least $29 billion per year in out-of-pocket costs to defend or settle claims brought forth by patent trolls in 2011. Patent lawsuits by these entities drain an estimated $60 billion every year from the economy.”

Last month, a bipartisan group of 20 members of Congress reintroduced legislation aimed at reining in "patent trolls." A similar bill last year was approved by the House, but stalled in the Senate.  The legislation would express a sense of Congress that sending purposely evasive demand letters should be considered a fraudulent and deceptive practice, according to a published report in The Hill, a website that reports on Congress and the nation’s Capitol.

The Credit Union League of Connecticut is among the local and national consumer organizations urging approval of safeguards against patent trolls.  "Patent trolls often allege that the use of necessary everyday technology violates the patent holders' rights, state vague or hypothetical theories of infringement, often overstate or grossly reinterpret the patent in question, and make allegations of infringement of expired or previously licensed patents," the organization said in urging Congressional action.

The Connecticut Retail Merchant Association has also called for federal action, noting that “patent trolls are entities that threaten main street businesses with frivolous lawsuits over vaguely crafted or poorly worded patents. Usually, the patent troll wins a settlement because small businesses do not have the resources to fight it out in court. In fact, most trolls wouldn’t stand a chance to win and so they rely on scare tactics to extract a settlement, said Executive Director Tim Phelan in an op-ed published last year.  The National Retail Federation has pointed out that patent trolls "lose more than 90 percent of the cases that make it to trial. But the cost of defending companies against the claims is so high — the average case costs $2 million and can take 18 months — that many victims settle out of court. The cases cost legitimate businesses close to $30 billion a year in direct costs and $80 billion indirectly, amounting to $943 a year for the average household when passed on to consumers."

Authors Michael J. Meurer and James Bessen indicate, based on their research, that "there is no question that patent trolls cause immense harm. A recent survey of software startups found that nearly half reported “significant operational impacts” from patent troll lawsuits. These included a wholesale change of strategy or a shutdown of certain lines of business. Another survey found that roughly three of every four venture capitalists were adversely impacted by patent litigation."

Hurley, who has grown her Eastern Connecticut business (Southeastern Employment Services) from less than a handful of employees to 80 employees in just over a dozen years, says her advice to other small business owners is simple:  “don’t give them a penny.”  And she hopes that this will be the year that Congress approves patent reforms that will protect unsuspecting small business owners from “paying because they’re scared.”

Connecticut Medal of Science Nomination Deadline Approaches

The Connecticut Medal of Science is Connecticut’s highest honor for scientific achievement in fields crucial to Connecticut's economic competitiveness and social-well-being. Nominations for the 2015 awards, to be announced in May, are due by Friday, March 13. The Medal recognizes an individual who has made extraordinary contributions to the advancement of science in Connecticut. For this competition, science spans the physical and biological disciplines as well as mathematics, engineering and the social and behavioral sciences.

Modeled after the National Medal of Science, the award is bestowed in alternate years with the Connecticut Medal of Technology.  (Science in odd-numbered years; Technology in even-numbered years.) The most recent Medal of Science recipient, in 2013, was Thomas A. Steitz, Sterling Professor of Molecular Biophysics and Biochemistry, Professor of Chemistry, at Yale University and Howard Hughes Medical Institute Investigator.

Unlike their federal counterparts, the state medals are designed to recognize individuals, not teams or entire corporations. The work the awards honor must also have a "clear association with Connecticut," meaning it must have been performed in the state, at least in its final stages, or in a company or institution closely affiliated with the state. Profiles of all Medal recipients are featured permanently in the Hall of Fame, located at the Connecticut Science Center in Hartford.

Selection of the Medalist is conducted by the Connecticut Academy of Science and Engineering, using the following criteria:

1. Total impact of the candidate’s work on the current state of physical, biological, mathematical, engineering, or social and behavioral sciences. (primary criterion)
2. Achievements of an unusually significant nature and their potential effects on the development of scientific thought.
3. Distinguished service in the general advancement of science and engineering accompanied by substantial contributions to the content of science.
4. Recognition by peers within the scientific community.
5. Contributions to innovation and industry.
6. Influence on education through publications, students, etc.
7. A significant portion of the candidate’s work must have been performed in, or be associated with, an institution/organization/business located in Connecticut at least in its more mature and developed stage and during which time the candidate was a citizen of the U.S. or permanent resident who had applied for citizenship.

Nominations include a narrative statement by the individual making the nomination and three statements of support “from persons familiar with the technological aspects of the candidate's work.”

To date, Connecticut Medalists are:

Medal of Science

• Frederick M. Richards, Yale University
• Ronald R. Coifman, Yale University
• William C. Stwalley, University of Connecticut
• Michael P. Snyder, Yale University
• Robert R. Birge, University of Connecticut
• Steven L. Suib, University of Connecticut
• Thomas A. Steitz, Yale University

Medal of Technology

• Joseph Gerber, Gerber Scientific
• Charles H. Kaman, Kaman Corporation
• Anthony J. DeMaria, DEOS, LLC
• Gene Banucci, ATMI, Inc.
• Tso-Ping Ma, Yale University
• Jonathan M. Rothberg, Ion Forrent
• Yaakov Bar-Shalom, University of Connecticut
• Frederick J. Leonberger, EOvation Advisors

The 2015 Medal of Science will be presented at the May 19, 2015 Annual Dinner of the Connecticut Academy of Science and Engineering. Additional information is available from Richard Strauss, Executive Director of the Connecticut Academy of Science and Engineering, at 860-571-7135.

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.

New “Digital Cookie” Program Brings On-Line Sales to Girl Scouts of Connecticut

Another time-honored tradition has transitioned to the digital age.  Girl Scouts are now selling their celebrated line of cookies on-line.  Connecticut is one of the Girl Scout Councils across the country to be participating in the inaugural year of the Digital Cookie program – and the response has been better than expected. The new Digital Cookie program strengthens, expands, and enhances the well-known and highly regarded Girl Scout Cookie Program by “combining the values and lessons of door-to-door and booth sales with crucial 21st century business and entrepreneurial skills,” official say, “continuing Girl Scouts’ long tradition of preparing today’s girls to be the female leaders of tomorrow.”

Here’s how it works:  Prospective cookie customers are able to purchase cookies on-line, after having been contacted by a Girl Scout. (Or you can tell a Girl Scout you know that you're interested in becoming a Digital Cookie customer.) Each scout has their own personal page thru which the cookies are ordered, so the scout will receive credit for the sale, just as when the transaction is completed in-person.  Officials say that some girls will market their online cookie business by inviting customers to visit their personalized cookie websites through a link sent via email.  Others will take in-person orders using a unique mobile app designed specifically for Girl Scouts.

“We were excited here in Connecticut to give our Girl Scouts the opportunity to participate in a pilot of Digital Cookie, a first-of-its-kind web platform that lets girls sell cookies from their own protected, personalized websites,” said Tiffany Ventura Thiele, Communications & PR Manager for Girl Scouts of Connecticut.

“Digital Cookie represents the next evolution of the iconic Girl Scout Cookie Program, adding a digital layer that broadens and strengthens the Five Skills girl learn, while introducing modern elements like website customization and e-commerce,” Thiele explained.

Those skills haven’t changed:  goal-setting, decision-making, money management, people skills and business ethics.  With the new on-line system, customers will be able to pay by credit card and have cookies either delivered by the Girl Scout or shipped.

Sales are running strong thus far.  To date, in Connecticut, nearly 38,000 packages have been sold on-line, with more than 2,500 girls participating.  In fact, orders placed in Connecticut have been shipped to 49 states and the District of Columbia, as well as to military personnel.  (If you’re wondering, nearly two million boxes of cookies were delivered this past weekend, based on initial orders taken by Girl Scouts in Connecticut.)

Nationwide, a majority of the 112 local Girl Scout councils are participating in the Digital Cookie program for the inaugural 2014–2015 cookie season, which began in January.  Additional councils expected to be on board by the end of the year, using an updated version of the program, which will be tweaked based on the feedback received from participating Councils.

Officials stress that “because 100 percent of the net revenue raised through the Girl Scout Cookie Program stays with local councils, when you purchase Girl Scout Cookies you’re not only getting a delicious treat — you’re also making an important investment in your community.”

There are two new cookie options locally this year:  Rah-Rah Raisins, an oatmeal cookie, and Toffee-tastics, a gluten-free butter cookie with toffee pieces.

An informal poll on the national Girl Scouts website asks visitors to vote for their favorite Girl Scout cookie.  The top three thus far:  Samoas (30%), Thin Mints (27%), and Samoas (13%).

If you’ve yet to place an order, there’s still time if you have a sweet tooth for Samoas, Thin Mints, Tagalongs, Do-Si-Dos, Savannah Smiles, Trefolis or the two new offerings.  The Girl Scouts of Connecticut’s cookie program will continue with booth sales through the month of March, so there’s still a chance to fill the cookie jar.

Fearful of Social Ridicule? Depends on Your Personality, Researchers Find

Your overall personality temperament may determine how reticent or fearful you are in approaching and handling new situations, academic researchers have found.  Individuals who are more likely to fear being judged harshly by others are also likely to avoid, rather than be open to, new experiences “because of increased risk of behaving in ways that produce social ridicule.” Of the five overarching personality temperaments - Extraversion, Agreeableness, Conscientiousness, Emotional Stability and Openness – two personality traits demonstrated particular sensitivity to reticence and “fear of negative evaluation,” according to the researchers at the University of Hartford and two other institutions who collaborated in the study.

The researchers explored the interrelationships of reticence and fear of negative evaluation, or negative social judgment, finding that three of the personality dimensions—Openness, Conscientiousness and Agreeableness—were not significant predictors of either reticence or fear of negative evaluation.

Highly reticent individuals appear to give significant power to others to “define their social selves,” as indicated by the direct impact of fear of negative evaluation on reticence.

Extraversion was the only personality trait that directly and negatively predicted reticence, while Emotional Stability (i.e., Neuroticism) was a direct predictor of fear of negative evaluation. The research also confirmed a strong relationship between reticence and fear of negative evaluation.

Thus, if you understand your personality type, you may better understand your likelihood to respond with reticence, hesitance or fear when confronted with a new situation.

The “dysfunctional thinking” and anxiety due to emotional instability or the lack of openness to new experience contributes to fear of negative evaluation, the study concluded. It is this fear of potential negative social judgment that is at the heart of reticence, in which individuals believe that ‘‘it is better to remain silent than to risk appearing foolish.’’

The study, conducted by communication professor Lynne Kelly of the University of Hartford, Michael Hazel of Gonzaga University and James Keaten of the University of Northern Colorado, was published recently in the journal Communication Research Reports.

To reduce reticence, what is needed in addition to communication skills training, is a focus on helping the individual develop more positive thoughts to counteract those that produce fear of negative evaluation, the researchers indicated.

“Rather than thinking ‘I might say or do the wrong thing,’ the person can be trained to think ‘I am well prepared for this meeting and have some good ideas to share,’” Kelly suggested. By helping people become better communicators and training them to replace anxiety-provoking thoughts with realistic yet confidence-boosting thoughts, they can begin to speak up in more situations.

The so-called “big five personality traits” as generally described in psychology and used in the study are:

• Extroversion – Abundant energy, and the tendency to seek engagement and the company of others.
• Agreeableness - A tendency to be compassionate and cooperative rather than suspicious and antagonistic towards others.
• Conscientiousness - A tendency to show self-discipline, act dutifully, and aim for achievement.
• Emotional Stability (neuroticism) - A tendency to easily experience unpleasant emotions such as anxiety, anger, or vulnerability.
• Openness to Experience - A person who is high in openness to experience is creative, imaginative flexible, curious and adventurous.

Study participants were undergraduate students enrolled in communication or psychology courses at a private, moderately sized western university and local community college. The survey took about 15 minutes for students to complete.

Of the 336 students who responded, 40 percent were female. Ages ranged from 17 to 56, although 81 percent of the respondents were between 18 and 21 years old.  The demographic breakdown was 70 percent reported European American, 7 percent Asian Americans, 6 percent Hispanics, and 3 percent African Americans.  The researchers suggest that additional research would be warranted, with the full-length version of the “Big Five” personality measures, and a more diverse population demographic.

Yale, UConn Among Top 100 in R&D Expenditures, Federal Data Shows

Yale University and the University of Connecticut both rank in the top 100 higher education institutions in the level of expenditures for research and development (R&D), according to data compiled by the National Science Foundation. Yale ranked at #21 and UConn at #86 in the rankings for fiscal year 2013, in the Higher Education Research and Development Survey compiled by the NSF and the National Center for Science and Engineering Statistics.

The top 10 institutions are Johns Hopkins, University of Michigan (Ann Arbor), University of Washington (Seattle), University of Wisconsin (Madison), University of California (San Diego), University of California (San Francisco), Harvard, Duke, University of North Carolina (Chapel Hill) and University of California (Los Angeles).

Among local colleges and universities in addition to Yale and UConn, nine other institutions in Connecticut appeared in the national rankings, including  Fairfield University at #343 and Wesleyan University at#348.  Southern Connecticut State University ranked #522, Connecticut College ranked #531,  University of Hartford ranked #535,Trinity College ranked #536 and Central Connecticut State University at #552.  In addition, University of New Haven ranked #575, and Quinnipiac University #611 in the analysis that reported 645 higher education institution R&D expenditures.

The Higher Education Research and Development Survey is the primary source of information on R&D expenditures at U.S. colleges and universities, according to the NSF website.

The survey collects information on R&D expenditures by field of research and source of funds and also gathers information on types of research and expenses and headcounts of R&D personnel. The survey is an annual census of institutions that expended at least $150,000 in separately budgeted R&D during the fiscal year.

UConn’s R&D expenditures, $242,251,000 in fiscal year 2013 according to the data, has increased from $215,098,000 in 2004.  At Yale University, R&D spending has nearly doubled - growing from $423,664,000 to $788,784,000 during the same period.

Such R&D spending often is seen as a gauge of innovation in a state, because research can turn into technology transfer or new companies and the quality of research can attract top students, the Bangor Daily News has reported.

Overall across the country, university spending on research and development in all fields totaled $67.2 billion in FY 2013, according to data from the NSF Higher Education Research and Development Survey.

When adjusted for inflation, higher education R&D increased by less than half a percent in FY 2013 from the previous year, according to NSF. Officials noted that the overall amount represents the reported totals from 891 degree-granting institutions that spent at least $150,000 in R&D in the previous fiscal year.

The published survey results include the 645 institutions that reported at least $1 million in R&D during their previous fiscal year and who contributed 99.8 percent of the total R&D expenditures reported in FY 2013.  The data was released by the NSF in late February 2015.

Note:  this article was revised to include a number of Connecticut institutions inadvertently omitted in initial publication.

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

Norwalk is First in Connecticut to Approve Concussion Program for All Youth Sports

Norwalk has become the  first community in Connecticut to approve a city-wide concussion program for all youth sports, according to city officials.  The Norwalk Common Council, on the recommendation of its Recreation & Parks Committee, approved the new concussion guidelines this week, modeled after The Concussion Aware and Prepared Program (CAPP). Officials said the guidelines will apply to organized youth sports programs using Norwalk recreation facilities. The guidelines are intended to “plug the loophole that exists” in the current Connecticut Concussion Law which protects only public middle and high school athletes who play for school-sponsored teams, officials said.

“It is important that our children are protected and that parents and coaches have the information they need to keep them safe,” said Norwalk Mayor Harry Rilling. “Norwalk is proud to be a leader in providing these updated guidelines for all leagues who play on our public fields. We aim to make youth sports as safe as possible."

Last month, Connecticut’s Task Force on Youth Athletics and Concussions, staffed by the State Commission on Children, reported the results of their mandated study of  "occurrences of concussions in youth athletics” and issued recommendations for possible legislative initiatives.  The 21-member Task Force noted that “there exists within the State of Connecticut the need for guidelines in the arena of non-scholastic youth athletics,” indicating that private clubs and public recreation teams are examples of “non-scholastic” youth athletics.

The Norwalk Guidelines apply to any youth up to age 19 who participates in any organized sporting or athletic event or activity either conducted by the City of Norwalk or permitted to take place on any property or facility owned by the City of Norwalk. Activities including practices, training, performances, scrimmage, games and other organized competitions involving athletic activities such as sports and dance. With a population of just over 85,000, Norwalk is Connecticut’s sixth largest city, and has the third largest population in Fairfield County.

Former Norwalk Junior Lacrosse and RCA Soccer Coach, Katherine Snedaker, now Executive Director of the non-profit, PinkConcussions.com , and advocacy organization Sports CAPP.com which developed The Concussion Aware & Prepared Program, said, “our mission with these new guidelines is to help youth sports leagues update their policies with best practices, and increase safety for our kids while lowering personal liability for our coaches and city.”  The Concussion Aware and Prepared Program, which uses free online materials from the United States Centers for Disease Control and Prevention (CDC), is designed to provide up-to-date information regarding concussions for youth coaches and their staffs, parents and youth players and is available in English and Spanish.

“Hopefully this program will be a model for the rest of state,’’ Snedaker said. “Parents will now know their young children will have some of the same protections that benefit public middle and high school athletes.”  In Norwalk, the newly approved guidelines had received support for the Norwalk Youth Football and Cheer, Norwalk Junior Soccer Association, Norwalk Cal Ripkin Baseball, Norwalk Little League and Norwalk Junior Lacrosse, according to the SportsCAPP website.

The Sports CAPP program recommends five components that should be included in every concussion program. They are:

• Pre-Season Education and Training for coaches, parents and players to be able to recognize signs and symptoms of a concussion.
• Plan for Athlete’s Removal from Play for a suspected concussion by coach or athletic trainer or parent
• Communicating with Parents and Healthcare Providers after an injury
• Plan for Return-to-Play for the player who is 100% symptom free, has been cleared in writing by an MD, and has returned to a full academic schedule at school
• Injury Reporting and Data Collection for all occurrences of concussions at the end of each sport season, or such other date as may be mandated by the principal, sports team president or other leader.

The new guidelines for school programs in Connecticut approved by the State Board of Education (SBE) in January, will go into effect July 1, 2015, requiring that:

• Prior to taking part in athletic activities high school athletes and their parents or guardians will be required to read materials, watch videos, or attend in-person training regarding the school district’s concussion plan.
• Parents and guardians must sign an informed consent form that includes a summary of the district’s concussion plan.
• Coaches must complete training to recognize the signs and symptoms of concussions and learn how to get appropriate medical treatment for students.

The new State Department of Education “Concussion Education Plan and Guidelines for Connecticut Schools” indicates that “concussions can cause a wide range of functional short- or long-term changes affecting thinking (memory and reasoning); sensation (touch, taste and smell); language (communication , expression and understanding); or emotions (depression, anxiety, personality changes, aggression, acting out, and social inappropriateness).”  It points out that “athletes should rest their bodies and brains until they are no longer experiencing any symptoms of concussion.  Physical and cognitive exertion, such as homework, playing video games, texting, using a computer or watching TV may worsen symptoms.”

Under the state guidelines for schools, coaches must immediately remove any student participating in athletic activity who exhibits symptoms or behaviors consistent with a concussion or who is diagnosed with a concussion. Parents or legal guardians must be notified as soon as possible and no later than 24 hours after such removal. Before a student can return to any team activities, a licensed health care professional trained in evaluating concussions must provide written clearance.

http://youtu.be/Sno_0Jd8GuA

http://youtu.be/OFQcZHkLPuk

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.