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

More US Cities Seek to Join Stamford in Commitment to Energy, Water Usage Reductions in Commercial Buildings

Efforts are underway this year for seven additional cities, from Albuquerque to Ann Arbor, to follow Stamford and seven others across the nation, in making a long-term commitment to reduce energy and water consumption in commercial buildings and reduce emissions from transportation, while increasing competitiveness in the business environment and owners' returns on investment. The “2030 District” initiative began with Seattle in 2011, grew by two cities in 2012, to four in 2013, and then to eight in 2014 when Stamford joined Seattle, Pittsburgh, Cleveland, Los Angeles, Denver, Dallas, and San Francisco as a 2030 District.  Now working towards the designation, in addition to Albuquerque and Ann Arbor, are Detroit, San Antonio, Ithaca, Toronto and Portland.

Across the United States and Canada, 2030 Districts are forming with greater frequency to meet incremental energy, water and vehicle emissions reduction targets for existing buildings and new construction called for by Architecture 2030 in the 2030 Challenge for Planning.  Districts are generally private/public partnerships that commit to dramatic reductions in water consumption and energy and greenhouse gas (GHG) emissions, as well as adaptation and resiliency actions that address projected climatic impacts.

The Stamford 2030 District – launched this past  November - is an interdisciplinary public-private-nonprofit collaborative working to create a groundbreaking high performance building district in downtown Stamford.  Leading the way in the Stamford 2030 District are the Business Council of Fairfield County and Connecticut Fund for the Environment. As Stamford is a coastal city, its 2030 District will also implement a proactive vision to ensure resiliency against projected sea-level rise and storm surge.

The Stamford 2030 District – the first in New England - began with 23 founding members, including 11 property owners and 12 prominent professional and community stakeholders committed to meeting the 2030 Districts goals and targets. High performance buildings have proven track records of simultaneously increasing business and property profitability, reducing environmental impacts, and improving occupant health.

Now in the process of assessing the District’s current building performance levels, one-on-one assistance is provided to property owners and managers in benchmarking their buildings.  In addition, a first-time webinar will be held this week, on Wednesday, February 18, with several founding members highlighting best practices and procedures:

• Jay Black of SL Green Realty/Reckson Properties will offer industry perspective through his experience with benchmarking buildings in both NY and CT.
• WegoWise will present an overview of their web-based software that is able to benchmark a portfolio and provide deeper analytics into a buildings’ energy performance to find savings opportunities.
• Steven Winter and Associates will demonstrate how to take benchmarking a step further with tools such as building energy audits to help identify opportunities within the building.
• New Neighborhoods, Inc. will serve as a case study project in Stamford that has contracted with WegoWise for their benchmarking and will share their experience.

Officials indicate that District Members develop realistic, measurable, and innovative strategies to assist district property owners, managers, and tenants in meeting aggressive goals that keep properties and businesses competitive while operating buildings more efficiently, reducing costs, and reducing the environmental impacts of facility construction, operation, and maintenance.

“These collective efforts will establish the Stamford 2030 District as an example of a financially viable, sustainability focused, multi-sector driven effort that maximizes profitability and prosperity for all involved. Through collaboration of diverse stakeholders, leveraging existing and developing new incentives and financing mechanisms, and creating and sharing joint resources, the Stamford 2030 District will prove the business case for healthy and high performing buildings.”

Property owners and managers are voluntarily committing their properties to Stamford 2030 District goals; they are not required to achieve the District goals through legislative mandates or as individuals.

“Stamford is already a business leader in Connecticut. The Stamford 2030 District will make the city a sustainability leader nationwide,” said Megan Saunders, Executive Director of the Stamford 2030 District. With over 170 million square feet of commercial building space (including 6 million thus far in Stamford), 2030 Districts are rapidly emerging as a new model for urban sustainability, officials indicate.

The Stamford 2030 District provides members a roadmap and the support they need to own, manage, and develop high performance buildings by leveraging Community and Professional Stakeholders, market resources, and by creating new tools, partnerships, and opportunities to overcome current market barriers. This type of collaborative action is not only a strategic undertaking to keep Stamford competitive in the year 2030, but also represents a major investment in Stamford's future and reflects the collaborative nature of our region.

Helping Families Experience Joy of Adoption Is Goal of Start-Up Nonprofit

After six long, challenging and frustrating years, and spending thousands of dollars, a Norwalk couple adopted a child.  And in that moment, a new mother vowed that she would do everything possible to make sure that others would not be prevented from experiencing the joy of becoming a parent due to a lack of financial resources. Today, her daughter is an energetic and engaging 3-year-old and she is following through on the commitment she made to herself, launching a non-profit organization named The Adoption Hope Foundation.  The organization’s mission is to help break the financial barrier of adoption by providing grants to people who hope to build their families through adoption.  The fledgling organization is about one-third of the way towards meeting their initial fundraising goal, with a GoFundMe crowdfunding campaign underway that seeks to raise $10,000 by April 15.

“The thought that some people would not be able to have a family simply because of the financial barrier was heartbreaking to me.  And thinking about babies and children who would not be adopted simply because families couldn’t afford it was unacceptable.  With the average adoption costing approximately $35,000, many qualified, loving families are unable to pursue it due to the high cost.”

It was a long and winding road for Laura Loffredo.  “My husband and I struggled with infertility for six years.  We spent thousands of dollars.  We had eight failed fertility treatments and a miscarriage.  I prayed every night for a baby and the longing inside my heart was unbearable.  I was angry, bitter and heartbroken.  I couldn’t breathe.  I have often referred to this time as the darkest time of my life.”

“When we finally made the decision to adopt, it was like a light in the darkness. The first time I held my daughter in my arms when she was only a few minutes old, I was overcome with emotion,” she recalls.  “Adoption is a beautiful gift.  It is a life altering experience that has allowed me to feel the deepest kind of love imaginable. We believe that every waiting family deserves a child, and every waiting child deserves a family.”

She has spent the past two years researching how to start and run a nonprofit organization, including taking seminars offered by the Connecticut Nonprofit Association.  She has “talked to anyone who would listen – anyone who knew anything about the nonprofit world.”

Some suggested that starting a nonprofit was a tough road, but Loffredo is determined.  “I am compelled to do this - it was a calling.”  She has gained much support and encouragement from long-established nonprofit leaders and professionals in the field in Connecticut. “They have helped me tremendously by constantly answering my start-up questions and supporting me with their expertise in this area.”

More information about the new nonprofit, and their efforts to raise the necessary funds to begin grant-making, are available at www.gofundme.com/adoptionhope or by contacting Laura Loffredo at loffredo.laura@gmail.com

Thinking back on the adoption process, Loffredo recalls “I felt overwhelmed by the extremely high cost of the process.  I felt blessed that we were able to afford it but immediately felt upset thinking about people who could not afford this whose dreams were to have a family. I envisioned an organization that would support adoption by providing grants to people who wanted to build their families through adoption.”

The new business is filing the legal documents required to gain non-profit status, and they expect to have 501c3  in place by June. A website is being developed, and applications for grants will soon be available.  There will be no application fee, so as not to create an additional economic burden on prospective families.  The Adoption Hope Foundation anticipates awarding $5,000 grants by the end of this year.

A home study by a social worker, along with background checks, must be completed before applications will be accepted, and grant awards will be determined by members of a board, based on criteria including need and personal circumstances, such as “why they want to build their family through adoption.” Board members already in place include individuals with backgrounds in finance, law, fundraising, and social work, whose lives have been touched by adoption. Additional board members are now being determined.

In addition to launching the nonprofit organization, Loffredo is writing a memoir about her struggle with infertility and a children’s book about adoption.  She hopes to have both volumes published within a year, with the sale of the books to be used to help support The Adoption Hope Foundation.

A report by the U.S. Department of Health and Human Services Administration for Children and Families, using the most recent data available in 2011, indicated that “approximately 136,000 children were adopted annually in the United States (in 2006 and 2007). This represents a 6-percent increase in adoptions since 2000 and a 15-percent increase since 1990.”

In a 2007 survey, the Department noted that “of the 1.8 million adopted children in the U.S., 37 percent were adopted from foster care, 38 percent joined their families through private domestic adoptions, and 25 percent were adopted internationally.”  They also reported that “overall, parents of 86 percent of adopted children report that their relationship with their child met or exceeded their expectations.”

Plans Unfold for National Museum Store Conference in Hartford in April

If you’ve ever made a purchase at a museum store and wondered about how the merchandise was selected or the store operates, there will be no shortage of experts from the industry in Hartford this spring.  The 60th Annual Museum Store Association Retail Conference & Expo will be held April 17-20, 2015 at the Connecticut Convention Center. The event is the only conference and expo specifically created for retailers at museums, historic sites, botanic gardens, aquariums, zoos, libraries and more. The 2015 MSA Retail Conference & Expo is designed to help nonprofit retail professionals by providing four days of education sessions featuring industry experts and opportunities to connect with vendors who offer products matched with the museum store industry.

It will be the first time the national conference will be in Hartford.  In recent years the host cities were Houston, Los Angeles, New Orleans and Chicago.  The national meeting in Hartford will include a “retail boot camp” and a tour of the Mark Twain House and Harriet Beecher Stowe House.

The MSA website points out that “learning sessions are presented by the leading thinkers in nonprofit retailing who share the knowledge you need to run your store, meet the needs of management, make the most out of challenges, be a leader and through retailing contribute to your institution’s brand and extend the experience of your visitors.”

Manager of the Museum Shop at the Wadsworth Atheneum Museum of Art, immediate past MSA Board President Stacey Stachow, said when Hartford was selected to host the conference, “Connecticut has so much to offer with its rich cultural history, so many museums and things to do that relate to our members.”   In addition to the Wadsworth Atheneum, other MSA member institutions in the area include the Connecticut Historical Society Museum & Library, Harriet Beecher Stowe House, New Britain Museum of American Art and Friends of Dinosaur State Park and Arboretum.

The opening keynote speaker will be Roderick Buchanan, director of buying and retail at the British Museum Company.  The closing keynote speaker will be Dick Durrance, an award-winning National Geographic photographer and U.S. Army combat photographer during the Vietnam War. 

Among the industry issues that will be discussed is fair trade, which will be the focus of a panel discussion.  The conference website points out that “as consumers are increasingly interested in the origin of the goods they purchase, the fair trade movement is gaining momentum and is affecting buying in the museum store world. Expert panelists will offer insights into critical aspects of the fair trade industry, including who benefits from fair trade, why retailers should buy fair trade, and questions that should be asked about business practices in order to ensure that products are indeed fair trade.”

Other sessions include presentations on pop-up shops, museum store launches, visual merchandizing, ecommerce, the influence of various cultures, and the importance of museum stores in the overall experience of museum visitors.

The four-day event is expected to bring in 900 participants downtown utilizing an estimated 1,130 room nights, according to organizers. There will be 21 educational sessions, and more than 200 vendors on hand.  Approximately 800 institutions are part of MSA with more than 1200 individual members representing those institutions.

Stores in cultural institutions are different from typical retail operations in several ways, the organization points out. “These retail operations play a vital role in supporting the institution’s educational mission. They offer products that provide visitors with mementos and educational materials directly related to their cultural experience.’  Purchases made at museum stores provide important financial support for the institution, officials emphasize.

Nonprofits Across CT Have Economic and Jobs Impact, New Database Shows

The interactive webpage was constructed and database developed prior to Election Day as a means of providing information about nonprofit organizations that their supporters could use to reach out to legislative candidates to advocate for the many charitable organizations in their local districts.  With the winning candidates now determined, the database may prove even more helpful in advocating for nonprofit organizations in what promises to be a tight state budget in 2015. The database, developed by Connecticut-based Blueprint for Impact, is an “advocacy tool” providing a range of data and information, broken down on interactive maps by Senate district and by House district.   Nonprofit organizations provide a wide variety of services throughout local communities, including some supported with state funds.  

Among the categories of data available are the number of employees working in the nonprofit sector along with the total compensation paid to those employees and the payroll taxes paid and total revenue of nonprofits within each district.

In addition, the site reports on the value of grants made by nonprofit organizations, and the average age of the nonprofits operating in each district. The age of each nonprofit is the number of years since the IRS ruling on tax-exempt status was provided. In Connecticut, there are many nonprofits that have been tax exempt for over 50 years. Older organizations may be more influential in their community.

The points on the map were organized by NTEE category. NTEE is the National Taxonomy of Exempt Entities, which categorizes nonprofits based on their social purpose.

The mission of Blueprint for Impact is to “help nonprofits use data to rethink, reboot, and scale their social impact. We direct our impact into each of those three aspects.”  Christopher D. Brechlin  is the Founder of Blueprint for Impact, a registered Benefit Corporation based in Hartford, that offers a collection of data tools, services, and expertise specifically for nonprofits.

The data used to populate the maps was accessed using the National Center for Charitable Statistics (NCCS) Enhanced Extract of IRS Financial Data, 2013. NCCS allows users to download data processed by the IRS during calendar year 2013 as submitted on forms 990, 990EZ, and 990PF. All data is therefore “as is,” or as it was reported on the forms to the IRS.

Summer Olympics May Come to CT if Boston Bid for 2024 Succeeds

Boston is one of four cities being considered to be the United States entry in the international competition to host the 2024 Olympic Games.  If Boston's bid were to become a reality, at least one Olympics observer is suggesting that Connecticut may have an Olympic supporting role to play. Boston, San Francisco, Washington D.C. and Los Angeles have been selected to develop bids to be considered by the U.S. Olympic Committee, which would decide which  city - if any - to support and present to the International Olympic Committee (IOC), which will decide in 2017 on the host city for the 2024 Olympics.

Rosanna Garcia, associate professor of marketing in the D’Amore-McKim School of Business at Northeastern University in Boston, who has attended the past eight Summer Olympics, sees the city turning to Connecticut and Rhode Island to host some events.

“With more than 300 events that typically occur at the Olympics, many cities around Massachusetts, and even Rhode Island and Connecticut, will need to partner with the International Olympic Committee to host these events,” Garcia points out.

“Many preliminary competition events would need to take place outside of the main Olympic Park areas so events may occur as far away as Connecticut. This also is an opportunity for more people to get involved with the Olympic Spirit,” Garcia adds.

The Boston Globe has reported that the U.S. Olympic Committee is expected to decide early next year whether to enter a U.S. city in the international competition to host the 2024 Olympics.  That would be just after the IOC acts on recent recommendations to reform its selection process, which would take effect with the 2024 Summer Games host selection.  The IOC meets next month to consider the series of recommendations.

Members of the U.S. Olympic Committee were in Boston last week, meeting with representatives of the Boston bid and area colleges which would participate, potentially providing sports venues, dorms, and other support services.  Last month, a promotional video advocating a Boston bid was released, and a website was launched. With an eye toward innovation and efficiency, the video highlights Boston’s bid “to create a sustainable model for hosting the Olympic and Paralympic Games that can become the blueprint for future host cities.”

The Connecticut Convention & Sports Bureau, the state’s official meetings and sports event sales and marketing organization, "supports Boston’s bid for the 2024 Olympics," said Interim President H. Scott Phelps.  "Regardless of whether or not Boston wins the Olympics, the City’s bid has helped to elevate the Boston and other New England brands to sports event planners from all over the world."  Officials noted that if the Olympic Games decide to come to Boston, "it could be great for tourism in nearby Connecticut as well, as spectators and competitors would be encouraged to come visit our State’s attractions," adding that "there might be opportunities for our state to host pre-Olympic competitions and ... athletes."

The Globe noted that if the International Olympic Committee, meeting in Switzerland in December, decides that its preference is for compact venues, as is expected, Boston is seen as a strong candidate and could gain an advantage over Los Angeles, San Francisco, and Washington, whose plans offer less intimate settings, according to the Globe.  Supporters of the San Francisco bid have noted that the chairman of the U.S. Olympic Committee, Larry Probst, lives in nearby Burlingame, CA.  The San Francisco effort is being led by Larry Baer, the chief executive officer of baseball's World Series champion Giants, according to published reports.

It is the first time that Boston has prepared a bid to host the Games, and it is being led by an organization called the Boston 2024 Partnership, a nonprofit organization formed to prepare the bid materials. The group is governed by a 36-member executive committee, and has launched a series of subcommittees aimed at master planning, fundraising, outreach, and engagement. Organizers note that no tax dollars have been spent on Boston 2024, and tax dollars will not be used to build venues or pay for the operation of the Games. Public investment will be confined to roadway, transportation and infrastructure improvements, most of which are already planned and are needed with or without the Olympics.

An Olympic games in Boston would utilize existing sports venues of both professional teams and area colleges, which could reduce potential costs.  Infrastructure improvements, such as in transportation, are already on the drawing board, and could accelerate with a Boston bid.

The U.S. last hosted a Summer Olympiad in Atlanta in 1996; a Winter Olympics in 2002.  St. Louis hosted in 1904 and Los Angeles held the Games in both 1932 and 1984. In recent years, the unsuccessful U.S. bids to the IOC was to host the Summer Games were New York (2012) and Chicago (2016).  The 2016 Games will be held in Rio de Janeiro and the 2020 Summer Olympics are scheduled to be held in Tokyo, Japan.  Other potential contenders, according to published reports, include Paris, Rome,Doha, Istanbul and either Hamburg or Berlin in Germany.

“Holding the Games in the Boston area would serve as a catalyst for growth in the region,” said John Fish, CEO of Suffolk Construction and driving force in the initiative. “We are also excited for the chance to deliver something that is both powerful and meaningful for the worldwide Olympic and Paralympic movements that will also connect more youth to sport.”

Postpartum Psychosis More Prevalent Than Most Realize

Listeners to the National Public Radio program “On Point” this week heard a Connecticut resident discussing the progress being made on a one-on-one basis, as well as through international efforts, to respond to the prevalence of postpartum psychosis. Teresa Twomey of Cheshire is co-coordinator in Connecticut for Postpartum Support International (PSI) the leading organization dedicated to helping women who experience perinatal mood disorders, working to increase awareness among public and professional communities.

Approximately 15 percent of all women (1 in 8) will experience postpartum depression following the birth of a child, according to the nonprofit organization. Up to 10 percent will experience depression or anxiety during pregnancy. When the mental health of the mother is compromised, PSI explains, it affects the entire family.

A woman with postpartum depression might experience feelings of anger, sadness, irritability, guilt, lack of interest in the baby, changes in eating and sleeping habits, trouble concentrating, thoughts of hopelessness and sometimes even thoughts of harming the baby or herself.

In a TEDx talk in Hartford a year ago, Twomey described her own postpartum psychosis, which was both unexpected and severe.  While initially reluctant to discuss her circumstances publically, the well-publicized deaths of children in the U.S. at the hands of their mothers while suffering from postpartum psychosis prompted her to action. 

Based on her personal experiences, Twomey is the author of “Understanding Postpartum Psychosis: A Temporary Madness.” In an interview with FOX Connecticut when the book was published five years ago, she said "while most women who suffer postpartum psychosis eventually recover without harming anyone, they most often do so in silence.” Paranoia is a common symptom, explained Twomey, and “that moves women to hide their symptoms from everyone around them. The woman can hence appear normal, but be putting both herself and her baby at risk. We can prevent and treat this, but we need to recognize it by better screening of women postpartum."

While many women experience some mild mood changes during or after the birth of a child, 15 to 20 percent of women experience more significant symptoms of depression or anxiety, according to the PSI website. Women of every culture, age, income level and race can develop perinatal mood and anxiety disorders. Symptoms can appear any time during pregnancy and the first 12 months after childbirth.

PSI stresses that there are effective and well-researched treatment options to help advance recovery. Every perinatal mood disorder, no matter how strong the symptoms are, is temporary and treatable, PSI points out.

PSI Coordinators are volunteers who offer caring and informed support and resources to moms and their families. They also provide information and resources for area providers who are caring for pregnant and postpartum families.  In Connecticut, the volunteer organization has support groups based in Middletown, New Britain and West Hartford.  Support services provided are free of charge.

The organization states that there is no one cause for perinatal mood and anxiety disorders. Women who develop depression or anxiety around childbearing have symptoms that are caused by a combination of psychological, social, and biological stressors, and there does not need to be a family history of depression.  “Developing a perinatal mood and anxiety disorder is not your fault,” the website emphasizes. “You did not do anything to ‘get’ this.”

PSI headquarters is located in Portland, Oregon and has members all over the world, including volunteer coordinators in every one of the United States and in more than 36 other countries. PSI disseminates information and resources through its volunteer coordinators, website and annual conference. Its goal is to provide current information, resources, education, and to advocate for further research and legislation to support perinatal mental health.

Twomey said that postpartum psychosis should be treated as a public health issue, so that greater attention could be focused on prevention.  Although retelling and reliving her story is difficult, she does so because “if this helps one family, saves one life, it is worth it.”

Teen Journalists Bring Attention to Issues of Cyber-Bulling, Underage Drinking, Social Media Stress

Connecticut teen girls drink at a higher rate than the national average, Connecticut’s teen drinking rate is higher than ever, cyber-bullying rates among girls in the state have increased, and moderate to high stress levels among a majority of teens nationwide – and how they respond to stress – are raising new concerns. Those are just some of the statistics highlighted this month by student journalists at the Connecticut Health Investigative Team (C-HIT), an investigative news website populated by veteran journalists focusing on health issues facing the state. In recent days, the high school students - participants in week-long journalism workshops at UConn, Quinnipiac and Yale universities led by C-HIT - have been producing news stories that target issues facing a demographic they are not only familiar with, but, in most cases, part of. The students are learning research methods intrinsic to journalism and the results of their work have been eye-opening. Some of the highlights:

With access to social media reaching an all-time high, cyber-bullying rates have gone up among girls in Connecticut, according to the latest Connecticut High School Youth Risk Behavior Survey. In Connecticut in 2013, cyber-bullying rates among girls were at 22.8 percent - more than 1 in 5 girls reported being cyber bullied. That was an increase of 2.7 percent from 2011. Unlike among females, cyber bullying among males dropped by .2 percent, to 12.3 percent in 2013.

According to statistics from the Bureau of Justice, 37 percent of teenagers reported being bullied at school and 52 percent said they were victims of cyber bulling. Cyber bullying is tormenting, humiliating, or harassing another individual using the Internet, cell phones, or other types of social media.

Of the young people who reported cyber bullying incidents against them, one in three reported that they experienced threats online. Well over half of young people do not tell their parents when cyber-bullying occurs, the website says. Surveys show that girls are twice as likely as boys to be both victims and perpetrators of cyber bullying.

The Youth Risk Behavior Survey of 2013 reported that Connecticut girls are more likely to drink than their peers nationally. In Connecticut, 8.5 percent of high school girls have driven drunk – which is higher than the national average of 7.8 percent. In Connecticut, 37 percent of high school girls surveyed said they had at least one alcoholic drink, at least one day before the survey, compared to 35.5 percent nationally.

Teen drinking is a problem nationwide, but it is more apparent among teenage girls. Roughly 90 percent of adults who have substance abuse problems now began as adolescents, according to Dr. J Craig Allen, the chief medical officer of Rushford Center, a Connecticut substance abuse and mental health treatment center. Overall, Connecticut’s teen drinking rate is higher than ever, with students experimenting with alcohol as early as 11 years of age -- nearly two years younger than the national average, according to the Rushford Center. Teens in Connecticut are consuming 26-28 percent more alcohol than their peers around the country, according to data from the Office of Juvenile Justice and Delinquency Prevention.

The availability of alcohol plays a factor in teen drinking. Other contributing factors in suburban areas include stress, with many teens placed under academic and other pressures on a day-to-day basis, experts suggest. A 2012 study by the Columbia University Teachers College found evidence that “affluenza,” described as a “metaphorical illness connoting hyper-investment in material wealth among upper-middle class families,” was a factor in negative behaviors including drug and alcohol use.

Nationally, teens are feeling stressed in and out of school, according to a survey done for the American Psychological Association. The survey showed that during the 2012-13 school year 55 percent of the 1,000 teens questioned said that they felt moderate stress during the school year, and 27 percent said that they felt “extreme stress.” Forty percent of teens said that stress is making them irritable or angry, and 36 percent said that stress made them nervous, angry or fatigued, according to the survey.

The survey also found that social media plays a role in teen stress. Thirty-nine percent of girls and 29 percent of boys questioned said that they do care how others perceive them on social media --- and that they need to keep up a persona on social media websites.

Of most concern to doctors in the survey findings was how teens dealt with stress. Forty-six percent of teens responded that playing video games was their way to manage stress, 43 percent said they surf the internet and only 37 percent said that they would exercise or walk.

This summer, C-HIT worked with 75 students in a 'newsroom' setting, with each student researching, reporting and writing his or her own story,  working with complex databases and conducting interviews.  The 2014 workshops were supported by organizations and individual donors including the Dow Jones News Fund, William Graustein, the Fisher Foundation, People’s Bank, the Knox Foundation, Quinnipiac University, and the Community Foundation for Greater New Haven. The journalism workshops will be offered again next summer.

Photo:  Among the C-HIT students are (left to right) Mackenzie Brayman, a student at North Stonington High School; Julyanna Schreider and Shamoya Hanson, students at the Journalism & Media Academy, Hartford; Talon Cooper, a student at Hillhouse High School, New Haven; and Conner Fritchley, a student at Wilton High School. Information included in this article was researched and developed by the students for their news stories.

Additional investigative news stories by the students participating in the C-HIT summer journalism program can be seen at http://c-hit.org/

Nonprofit Governance Has Room for Improvement, Survey Finds

The 4.9% rise in charitable giving in 2013 is the largest gain since 2008, and comes at a time when greater attention is being paid by philanthropic donors and regulators to the governance practices of non-profit organizations. The CohnReznick 2014 Not-for-Profit Governance Survey reflects some progress as well as areas for improvement by nonprofits on a range of governance measures. The members of CohnReznick’s Not-for-Profit and Education Practice specialize in working closely with the boards and management of not-for-profit organizations to assist them in developing and implementing best-practices for their critical financial and operational functions. “Now more than ever,” the report indicates, “our clients are asking us questions about policies and procedures relating to audit committee governance and risk detection and minimization strategies.”

Key findings in the national survey included:

• 58% of respondent organizations stated that they have an audit committee that is separate and apart from their finance committee
• 54% of respondents stated that their audit committees have between four and six members
• 27% of the respondents stated that their organizations have a whistleblower hotline
• 68% of respondents stated that their annual board meetings contain an educational component
• 82% of responding organizations have a whistleblower policy in place.
• 42%, stated that they do not have an audit committee that’s separate and apart from a finance committee.

When identifying conflicts of interest, the survey found that 77% of the respondent organizations have an annual disclosure statement in place.

The survey also found that 68% of the nonprofit organizations include an educational component to their board meetings and place a strong emphasis on financial, strategic planning, and governance. Other areas receiving attention at board meetings include industry trends, technology, risk management, regulation and tax issues.

According to the National Center for Charitable Statistics (NCCS), there are more than1.4 million not-for-profit organizations registered in the U.S. This includes almost one million public charities, over 96,000 private foundations, and more than360,000 other types of not-for-profit organizations, including chambers of commerce, fraternal organizations, and civic leagues.

The survey found that less than 50 percent of boards noted that they are “very confident” in their organization’s governance practices. With the addition of new laws and regulations surrounding the industry, “this lack of confidence can give rise to much larger issues hesitation,” the report concluded. According to Forbes, charitable giving rose 4.9% in 2013, the largest increase in five years. This rise indicates “a renewed attention for not-for-profit organizations, which can also lead to renewed scrutiny.”

Knowledge of the intricacies of regulations and the effects that it will have on the governance practices of not-for-profit organizations is crucial to the success of affected organizations, the reported pointed out.

With origins dating back to 1919, CohnReznick LLP is the 10th largest accounting, tax, and advisory firm in the United States. Headquartered in New York City, CohnReznick serves its clients with more than 280 partners, 2,500 employees, and 26 offices – including Farmington, Glastonbury and New London in Connecticut, with plans for newly consolidated offices in downtown Hartford.

The consolidation of the two suburban offices in Glastonbury and Farmington is expected to relocate nearly 200 employees into Hartford later this year. The company plans to lease 50,000 square feet on the top two floors of the Metro Center building on Church Street.